I was getting ready to write a post last night about how I have pretty much given Nik the green light to look for work in Canada. I was going to tell D about it today. We have made a comprehensive project flowchart and have started on the first few steps that need to happen before I could send Nik full force back into the Canadian workforce…which I predicted would happen in about March.

Then, I didn’t get a post written last night because my scanner stopped working and I went all out tech geek trying (unsuccessfully) to get it to work until I was too tired to write. And this morning, Nik asked me to please take the kids to school because he was tired so he took D duty. So telling D didn’t happen either.

And then today, Nik got offered a job….sort of.

It is a state job in a field that he would like to work in. It has good salary and benefits. But! The state is on a hiring freeze right now. So they are proposing to hire him part-time on contract through a subsidy program for people with disabilities. Basically, the STATE will be paying his salary through this program because the STATE can’t hire anyone right now. The idea would be, when the hiring freeze is over, he would just slide into the “real” job. So he would get paid an hourly wage that would be the same-ish rate he would get on salary, but no benefits. There are not a lot of hours now, but he could get to 20 within the month and maybe 40 within the next six months. There are RUMORS that the hiring freeze (which affects all state agencies right now) will end in March, or maybe June. Or we just don’t know. If he would get the “real” job, the benefits are pretty good.

So, of course he is going to take it. But life is giving me whiplash lately. We will basically be operating on two parellel timelines right now. One is the immigration timeline and the other is the staying here if this job becomes permanent. Interestingly, because of some beaurocratic issues, we would not have been able to really turn in our immigration paperwork until at the earliest March and the latest probably June. So weird coincidence that the rumor mill has the hiring freeze lifting at those times as well.

I don’t trust the state too terribly much. So I have very mixed feelings. There is no guarantee that this will ever turn into anything. And Nik will barely be able to feel secure enough in this lovely Country of ours with health benefits, of which now he still has none. If a bunch of funny stuff happens, and this job doesn’t materialize, we need to set a hard deadline to give up on it. We cannot apply for immigration without a lease and a job offer from Canada, not to mention that it is very costly to apply so you really need to be serious. (roughly $3000 once it is said and done.)

I have developed a new attitude about moving since September. First of all, I realize that I cannot replace what is here in PDX. I think I was trying too hard to create a replica of everything in Canada and it is just not possible. So, I have been looking at it as a new adventure and have started to get really excited about going and opening the new doors that will appear once these close.

On the other hand, even though I know that my relationship with D needs to change no matter what, I have some obligation to the kids to try to remain close if it is at all possible.  The changing that I need to do does not necessitate a new city. Sometimes a change of venue kick starts the revolutions you need to make in your life, but I can do everything that needs to be done here as well.

Besides their relationship with D, the one other thing I was really sad to leave was their school. It is unique and irreplaceable. I don’t even know if the homeschooling climate in Canada would support such a school. Of course, there are other ways to homeschool and we would have been fine there and found new and exciting things to do and learn, but their school is one of a kind and it means a lot to us. I don’t know how much I have written about it, probably some, right? But I’ll give a brief description.

A group of homeschooling parents in the early 2000′s were sick and tired of driving their kids all over for social events and swimming and classes, etc. So they decided to make a place where all the good things about community would combine with all the good things about homeschooling and would combine with all the good things about school. It is basically a community college campus of classes and activities. Kids choose what classes and activities they want to be involved in. You can go for an hour a week or spend five days a week there. There are classes in every subject taught by mostly volunteers (who get a small stipend) to teach in areas they are passionate about. There are field trips organized with group rates and special behind the scenes stuff of all kinds. There are activities such as choir, plays, debate, lego robotics, etc. There are competitions like spelling bee and Destination Imagination. There are clubs like 4H and Scouts. They also arrange classes sometimes through places like science museums or local businesses and colleges. They get group rates for online classes like Rosetta Stone. There are no age restrictions (or very loose ones. You obviously aren’t going to put a 3 year old in physics or a 16 year old in Toddler Sing and Play). Parents are welcome and participate in classes and are largely the staff of the school as you barter for class tuition by doing “Community Duty” such as assisting teachers, doing bookkeeping, cleaning toilets, organizing fundraisers, etc. The halls and classrooms are packed with babies up to adults. There are even some classes that kids can take with adults like Yoga or current events. There is stuff for adults like Homeschool support groups. There are no grades in the lower grades and then in the upper grades kids can choose an optional grading assessment. It is basically a free, democratic school where kids and families choose what they want to be involved in. Its all available, but none mandatory.

And I do have to say that I have only been able to send my kids there the last 2 years because of their very generous financial aid package that they have awarded me for the past two years. I am still required to do community duty, but they make it easy, respectful and private to apply and receive financial aid. I hate fundraising, but they make me WANT to fund raise for them. I have gone to businesses and solicited auction items, donated curriculum for sales, and even spread the word through annoying forwarded emails to get donations for this school. (If you know me, you would know that I loathe these things, but I feel I have a duty to because of my financial aid, and also…I just BELIEVE in this school.) What it gives my kids is a community to call home. After all the fits and starts we have had with the church, here is a place where my kids are known and cared for. They see the same kids each week and can develop friendships, they interact with adults who can teach them different things that I can’t and who care about them. They also interact with babies and teenagers and kids of all ages, so unlike public school, there is no artificial hierarchy.

That is a bit of a tangent, but besides D, that is the only other thing I felt was really going to be irreplaceable and not duplicable. There is a great bunch of homeschooling families in Vancouver who do a lot of different activities together, but I-as a person who doesn’t drive and who struggles with communication–would have to WORK IT. It would be a lot of work.

There are still long-term advantages to Canada for all of us, I mean, school isn’t forever and I have to look at the bigger picture.  On the other hand, Nik would likely be stuck in some call center for a while, maybe working his way up to manager in Canada. Now, he might be able to do something he really feels he could contribute at.  So, you see where this is just a total back and forth.  But I find myself in a position for once of having two GOOD paths that my life can go.

Probably, fate will decide this one. If the job is good and goes well and becomes real and looks steady…we will probably stay. If it falls through, we will go. My main goal in all of this is to manage to balance short- and long-term stability for all of us. I’m hoping that the pieces will fall where they may in the next few months and the choice will be made clear. And if life is not that nice and neat (which it never is) I’ll have enough wisdom to find the right path and the right time to step onto it.

*The latest on OCB is that the poor guy that got the job N applied for cannot start working because days after he was hired, OCB was put on some kind of assets and hiring freeze. Nor can he go back to contract work for them because he is a hire. It could be up to six months or more before he will have a start date, or he may never start, depending on what becomes of OCB. I hope he has the means to make it through. But, yeah. Grateful to have dodged that bullet.

My state has a measure system where individual citizens can put measures on the ballot by collecting enough signatures. Volunteers with clipboards often try to collect signatures at the transit stations, so I get approached to sign petitions about once a week. In general, if I have time and if the measure isn’t offensive to me, I’ll sign them because I like to promote citizen action, I know what they are doing is hard work, and their measures usually generate a lot of much needed discussion.

So Avery and I were at a transit center after just having gone to the dentist. I was experimenting with having Avery walk instead of use the stroller, so I was having to keep a close eye on him, as well as watch for the train. I was approached by a petition worker, and she wanted me to sign a measure that (I thought) had to do with having people vote for parties instead of individual candidates. I knew that would never pass, but it was interesting to me because this is what they do in many other countries (such as Canada) and the idea is that you are voting for platforms and ideas and not on individuals, thus keeping a lot of the petty negative attacks out of the elections. It doesn’t totally work, of course, as everyone knows who leads the party. One can find that Stephen Harper is both loved and loathes (I tend to fall on the loathe side of that one) and the response to the Death of Jack Layton last summer bordered on hero worship. However, I do think it is an interesting way to keep the focus of elections on policy instead of who blew who and who left their wives for younger models and how fat the first lady is (NOT!) etc.

So, I”m signing the petition and I’m watching my kid and I said, oh, yeah…like they do in Canada. And she goes, well, Canada is more grounded than us, they don’t let immigrants in.

(Did you just hear the breaks go off in my head. I was literally, “Wh..Wha..Whaaaat?” I mean, Canada is 50% immigrants. They have a very liberal immigration and refuge policy. And what do IMMIGRANTS have to do with it anyway?)

And then, after I stuttered for a moment having already signed the damned petition and handed it back again, she went off on this bigoted tirade about immigrants and drug dealers and sex workers that JUST WOULDN’T STOP!

Ok, so get this logic flow: She tells me she has MS, and she can’t keep a job and she can’t get on disability. And that, apparently, is the fault of immigrants. And then she tells me that she has been sexually assaulted, and that hundreds of women are in jail for assault because they defended themselves against rapists but the rapists got off and they got put in jail for defending themselves, and somehow, this is the fault of immigrants.

And at this point, I just wanted to get the hell away from her, because telling her I was on disability and married to an immigrant didn’t seem wise and I was too busy trying to keep and eye on my kid to come up with anything educated to say. Thank God my seven year olds were not there, because then I would have HAD to say something. Avery was oblivious, of course.

But lady? If you removed every single immigrant from the US you would still have the exact same problems. You are not able to keep a job and cannot get on disability because you are a member of an oppressed group that is systemically discriminated against, just like many of the immigrants you hate so much. And the problems with rapists not being prosecuted and women not being believed are because of rape culture and the patriarchy. Many more citizens who rape get away with it than immigrants who rape. And it is wrong on both accounts, but if anything, immigrants are MORE likely to be prosecuted than citizens.

Maybe the rest of you already think this is obvious, but I just had a small revelation. Are these people who think in these totally illogical leaps like this just UNABLE to process that their own country could treat them like this so they have to blame it on something “foreign”? I do NOT get the hatred of immigrants. As a person who has had to deal with immigration issues for years, here is how I think it should go down: A person who wants to move to a new country should provide a detailed background check. If there is nothing serious on the check, they should be allowed to move and be eligible for (with the same responsibilities as well) whatever residents are eligible for and be able to move to a fairly quick path to citizenship. The world would be a much more egalitarian place if this were possible. (And yes, the US would likely lose some power and wealth, but gain an appreciation for diversity.) Locking people in or out of anything for the purely arbitrary reason of where they were born is just stupid.

Anyway, I shudder that I supported this stupid woman’s petition and was not able to get myself together to respond coherently to her. By the way, it turns out, her petition was the opposite of what I thought it was. It was a measure to allow individuals who are affiliated with no party to run for office. To which I say, that is stupid. Although I support the idea of more than two parties as a way to enhance the political process, if you can’t get a platform together and a party to support it (and this includes founding your own party) then you probably shouldn’t be running for office anyway.

Gah!

Anyway, to promote the outing of OCB director Linda Mock, which I support, I will publish a few links of info for ya.

First, an article about the OCB protests that happened earlier this month, with some good commentary.

Second, a good summary article from the Braille Monitor: A Wake-Up Call for the Oregon Commission for the Blind

And third, a Change.org petition to the Oregon Legislature that calls for the resignation of Linda Mock.  (BTW, the shitty spelling and grammar on there should be a clue as to the need for skills training for blind Oregonians, but I respect their speaking out, even if done so imperfectly.)

There are some good employees at OCB, I do want to say that. But the defensive comments of Ms. Mock are just hilarious. They couldn’t track funding because they are counselors, not accountants????? At almost every job I’ve had, I’ve had to track funding. As a teacher, I had to track supplies and curriculum purchases, as a researcher, I had to manage grant budgets, as a home health care worker, I have to track hours, and any money that changes hands between client and worker. And believe you me, I AM NOT AN ACCOUNTANT. And then they couldn’t give a ten-page budget document to their (mostly blind) commissioners because it was TOO COMPLEX? C’mon. I got a ten page budget in the mail yesterday from my stupid HOA and I understood it just fine. And they can’t track cell phone bills because they are HARD TO READ? Um, I’m blind, and I can read my own phone bills ON THE COMPUTER.

Oh, she entertains me. Almost as much as when she said N was the most qualified for the job but they wanted someone who could start right away with no training. Heh.

John Crighton chilling out on Planet Acquara

This isn’t anything new to me, but it is weird how all of our stuff, our problems or whatever, are relative. One of the struggles I admit to having is when people whine or complain about stupid shit. I know it sounds stupid to me, but to them it is a real problem. I say this knowing that if you dropped me in say, a refuge camp in Somalia or a Chinese factory where I had to spend 16 hour days working in crappy conditions for little pay, I would have a huge wake up call of mass proportions because I get that I just have NO idea.

And then there is stuff I have come to understand better, you can do stuff without, but when you have it, it is hard to give it up. For example, there was a time when I went, oh whatever it was, 1400 days straight as a single mom with no break. When other moms would complain about how hard the weekend was going to be with their husband out of town. And they would have to feed and bathe and otherwise deal with the kid for 48 hours straight. Oh, Boo Hoo, I thought, totally thinking that was weird. Now that I have a live-in parenting partner to divide the work up with, I get it. Don’t get me wrong, I know I could take care of all three kids myself for all eternity if necessary. I have no doubt I could do that and would if circumstances required it. But now, I just don’t want to. And what a luxury it is to have that choice.

Wow, I’m getting all John Scalzi-esque in my use of italics, there.

Anyway, I was just thinking about this today. I went to an indoor playthings (one of those bouncy house places) with a friend of mine and three of her four children. She is a good mom and works hard for her kids and cares about them very much. Her two oldest kids, she adopted out of foster care (they were cousins of her husband) when they were 5 and 2. Then she has two bio kids as well. The three youngest kids are doing fine. But the oldest, the one she adopted when she was 5, has severe attachment disorder problems. The kind that have changed her whole life and whole way of thinking. She is 10 now, and she steals, starts fires, tries to hurt herself, tries to hurt other kids, doesn’t do any work or school work, gets suspended all the time, has screaming fits, etc. They have to lock up everything in their house. They go to counseling several times a week. I don’t know the extent of what has been tried, but I do honestly believe that they have tried everything within their ability to help her. The current thing they are trying is to have her spend time with her birth mom, thinking that perhaps she will connect on some level to her. (The birth mom is in a much better place, now.) But while we were sitting there, the birth mom calls her to tell her that she can’t keep her as long as planned. The honeymoon period is over, and the birth mom is seeing some of the behaviors that have manifested.

My friend tells me all this by talking nonstop in a sing-song voice. She throws in a lot of wit and sarcasm as she goes, so although you know you are listening to a tragic story, you can’t help but laugh. My friend has come to a place of somewhat acceptance, knowing that there may be nothing that she can do. That she might not be able to keep her alive or out of jail before she is 18. At her wits end, I can tell that she needs to talk, and that there is a great sadness under the surface. She tells me about the statistical likelihood of her daughter committing suicide while she smiles at and bounces her 3 month old son on her lap. I get the sense that my job is to listen, but not probe too much, especially the emotional side of it. If I break her from her rapid-fire, upbeat ironically funny telling of the story, she might totally crack into a breakdown that lies just under the surface. I search my brain, my behavior disorders training for any ideas, but I end up just shutting up. I know that they have already tried everything and there is nothing I can say that they haven’t already thought of.

In another conversation, we both started talking about how much we like Head Start, which both of our kids attend (but separate programs, Baby A is in Early Head Start, her 4 year old is in classic pre-school head start) and I tell her that the teachers say everything in  Spanish, then English (although others probably are fluent in English, she and I are both the only white family in our kids class) and then they come over to me and interpret for me again in English, right in front of me so I can hear/lipread. It must be a lot of work for them, but this is the first time that anyone in the history of my lifetime has done something like that for me. Usually, once I tell them I’m hearing impaired, there may be a token exclamation of assistance and then I am almost immediately and completely excluded from all future communication and have to fight my way back in, depending on my motivation to do so. So she tells me about how she hates going to Head Start parent meetings because the primary language is Spanish and then they interpret English for her. She talks about how awful it is to sit there every five minutes and not understand. How she really can’t participate because she is always behind, she can’t follow in real time with the conversation and she misses what the audience members contribute. She says she feels invisible. I was like, yeah, that is pretty much every day of my entire life, and 999 times out of 1000 I have no interpreter even trying to intervene for me. I don’t know. It was just interesting hearing that perspective, because here is this woman dealing with unimaginable challenges in her life with respect to her daughter, but this is what bugs her. It is something that I rarely even think about, for me, its just how it is. Nothing al that profound there, I just found it interesting how people learn to adapt to their problems and make their way in the world no matter what.

As an aside, a little head start story, which probably says something pretty sad about the state of minorities in our country. The first day I went to Head Start with Avery, I rode the school bus with him while we picked up these other mothers and their kids, all Hispanic and Filipino. I smiled and said hi, but none of them talked to me. I assumed it was a language barrier. When we get there, the teachers started in in English and Spanish about policies, i.e. no photography–we have people hiding in women’s shelters here from abusive husbands (sad), etc. etc. I caught bits and pieces of it, but when a teacher asked me a question, I had no idea what the question was or what the answer would possibly be since I missed so much. So I just apologized and said I am hearing and visually impaired and was unable to follow the conversation. And I swear I heard a collective “Ooh! So that’s why she’s here!” whispers from the other mothers. And then they all became very nice and welcoming after that. It kind of felt like, “What’s the white chick doing in Head Start? What’s her problem? Then when they found out I had a disability, it was almost like I got street cred or something. Now the moms and I shuffle along in our differing language struggles but manage to be friendly and communicative with each other. I can’t believe anyone thinks we are anywhere near being post-racial when the entire Head Start program is filled with minorities. The thing is, Head Start is a bit of work. For some, I’m sure it provides much needed child care, but in the Early Head Start program, at least, they require much of the parents to be involved. Everyone there is working hard to give their kid the best they can. These are not stupid, lazy, or incompetent people. They just find themselves in poverty by means of having brown skin.

Somewhat switching gears, I’m discovering that I’m changing a lot from my absolute anxiety ridden psychoticness of last summer in which we did our schizoid Vacouver vs. Portland fiasco and I finally admitted to myself that there is something UP with Avery. The anxiety level and fear and uncertainty was so high that I was just physically sick for months. What not taking the Vancouver job and staying has done has been to give me a anxiety break and let me rest and get a grip again. Also, to see what I could offer Avery and to adjust to “the new normal.” In addition, taking over attendant duties for D has put us there every day, and has given me clarification and a better idea of what is going on with him and what my role should be in his life. The financial aspect of taking over that job is that we are also not in total dire desperate money straights like we were. Don’t get me wrong, it is still extremely hard to make sure the budget is balanced, but before we were hemorrhaging. I’m still supporting 7 people, but now it is on about $37K a year(ish) instead of about $28K. That 9K is giving us a very slight bit of breathing room. (Still haven’t heard anything about my dad and the rent. Called him to talk about it and left a message. He hasn’t called me back. So, I’m not really working hard to make that conversation happen, nor is he at this point.)

In essence, I feel like now I can THINK.

And so I’m thinking it is time to actually go Beyond Acquara. Did I ever tell you why the blog is called that? OK, here is the story. In around 2002-2003, I had these two awful years. I was fighting for my job, I was fighting for my fertility, I was fighting for D’s life, and I was not even fighting, just watching my mom die. And I remember watching this episode of Farscape (coughnerdgeekcough) back then where our hero, John Crighton, who has been through interplanetary war and hell and can’t find his way home, gets stranded on a paradise planet called Acquara. And essentially, he gives up. He just sits back and decided he is going to stay right where he is and take a break from life. He was burnt out and couldn’t do it anymore. And at this time in my life, I applied to go on disability (partly out of absolute necessity, as I could not afford COBRA and I had a pending uterine surgery and no way to pay for it. Disability got me, eventually, medicare). So, basically, at my wits end, I just decided to chuck it all and quit this life that I was supposed to be living on someone else’s terms. They said to go to school, get an education, work hard and get a job. I did all those things. And my life still sucked anyway and I was still losing jobs, not getting reasonable accommodations, fighting for every little disability civil right thing, etc. I was no longer going to play by their (their meaning “society’s”) rules when they were not treating me or my mom or D or any of us fairly. I was going to stop, take a break. Think about what I really wanted, and do THAT. I was dropping out. People could judge me and I didn’t care. Can’t have it both ways, I would say. Can’t have people with disabilities NOT get benefits and yet still not give them any civil rights. If I wasn’t going to get met halfway, then screw it. I needed to take a break, and no one could tell me I hadn’t tried hard to play by their rules. If you keep doing the same thing and it isn’t working, it needs to change. And the way I was doing life was not working. I didn’t know what was right, but I needed to stop and reassess. I had gone to Acquara.

It was during that time that what I figured out I wanted was to raise children and to have a home. So that is what I did. I lived in my dad’s house with my kids and that is what I concentrated on. For a time, I thought that was it for me. That was what I was supposed to be doing. Mostly because raising small children is so all consuming, it certainly didn’t FEEL like I was lounging on a beach sipping a pina colada like John Crighton did on his Acquara. But for a time, it was comfortable there. But always in the back of my mind was a “there is something else, something more I’m supposed to be doing here.” My time on Acquara was not supposed to necessarily be forever. But it was a time of trying to figure out, OK. If doing it “their way” isn’t going to work for me, what will? What should I be doing? What is the new direction I should go? How will I get there?

When I started this blog and decided to name it, my life was changing a lot. Nik had just come into my life on a more serious, “we are finally going to figure out how to do this” level. I saw bright possibilities for my future. I felt it was time to go Beyond Acquara. And my other blog, “A Letter to My Children” was all about the kids. This one was supposed to be about how I was going to go beyond where I was at and pave my new way. This didn’t necessarily mean I was just going to go back to work, although work might be a part of it, it was figuring out a way to live purposefully and meaningfully by following rules that worked for me and my family. I used to have a goal to get off disability, but now I don’t know if I ever will and I don’t feel ONE IOTA of guilt about it. When I talk to people who hear our stories about Nik and Wells Fargo or myself and some of the stuff I’ve dealt with in the workplace, there is always this notion of “you didn’t try hard enough, you didn’t explain things well enough…” And you know what? They have ABSOLUTELY NO IDEA how hard people with disabilities try to play by the unfair rules that corporations, government and culture bind us with. NO IDEA. And my feeling is, if it is going to continue to be acceptable to treat us like crap, then I will take your shitty SSDI consolation prize and move on with my life. I have paid into FICA the required amount, I continue to pay FICA taxes, this is an insurance plan that I’ve paid premiums on. If people/ corporations want to have such control over who they hire and what they are willing to accommodate to the point where over 70% of a population (and 99% of MY population of deaf blind) are left out, then fine. I will cash in on my insurance policy and work it from the outside. It will bite them in the ass anyway. By not enforcing the laws and strengthening regulations on fair employment practices, what you get is an epidemic of people with “lesser” disabilities also cashing in on their SSDI insurance policies. When a person with carpel tunnel or back aches cannot get work because employers won’t even provide them with some simple modifications then more and more people that could work are going to continue to drop out at a loss to everyone. I still believe, that EVERYONE can work. Everyone can contribute at some level. The problem is, not everyone can work under the current employer-biased corporacracy.

But anyway, so Beyond Acquara. Nik and I have been challenged by a lot of stupid shit in our effort to move on. Immigration, discrimination, my dad, D. Avery (well, Avery is not stupid shit, but he has been an unexpected element of our efforts to move on.) But in some ways, it may be Avery who is the catalyst, the motivation to get us on with it. My goal to raise a family still remains true, but my definition of “home” has changed. In some ways, my definition of “family” has evolved. Avery, along with all the kids, but Avery in particular because of his potential challenges in life is motivating me to look past my fears and anxieties.

I’ve had this damned song in my head that goes: “Lend your voices only to sounds of freedom/ No longer lend your strength to that which you wish to be free from/ Live a life of love and bravery and you shall lead/ a life uncommon.” So, though you can’t totally avoid it, I no longer want to lend my strength to that which I wish to be free from. That includes things like my dad and this house. If anything was a useless, unnecessary problem, that is. D will always be in my life in some way or another. But I know that I can’t fight the totality of shit that quads have to go through in this country for someone who isn’t fighting for life himself. I have a lot of empathy for what he has to deal with. I wish I could change it in an instant. I’ll always support community living options for high level quads. D’s issues are complex. But his complicated issues and my empathy for them don’t have a lot to do with the basic standards of which I insist myself and the kids get treated. And he is not meeting them. If we were a true team like I had wanted, if he was willing and/or able to treat us with minimal levels of respect, sacrifices I might make for him would feel more worth it, but right now, I feel like I’m often put in the position of choosing between him and my kids. First of all, I don’t want to lend my strength to that anymore. Second, if I do, the kids are gonna win. I have to look at the reality that what I wanted for us is not going to be what is. I do not think D is a bad person, I think people are nuanced and complex. I realize that I don’t have to think he is a bad person to move in a different direction from him. Its just the way it is.

So, this is long enough of meandering thoughts. I can just feel the winds of change coming. No definite plans have been made. We are just trying to relax through the holidays and enjoy the now. The magical moments we have every day with our kids and our community. Now it feels like a lot of shedding and mourning things that I can’t have, or never did have and can’t want anymore. But also a new energy and excitement for what is to come. I was not ready last summer, but I’m building my strength now for a new adventure, a new direction, a life Beyond Acquara.

I found this place to take Aaron while Naim was in drama class downtown, thinking that hey, I could go have a cup of coffee and not have to worry about entertaining him. But then I found it was inaccessible. I could have still used it, but it limited my capacity to say, have D come pick up the kids, or have a birthday party there and invite two of the kids in their classes who use wheelchairs.  As a courtesy I wrote them a letter telling them if they didn’t fix it, someone was gonna get sued. Better a nice letter by me who will give you a chance to do something about it then to wait for someone to really sue you. But they flat out ignored me for months. So finally, I filed a complaint. Which, by the way, is a pain in the ass and a lot of work.

Which brings me to these stories that you hear about ‘career’ ADA civil suit lawyers, where lawyers with disabilities go around finding ADA violations and filing complaints against the offending parties and pretty much living off the settlements. And they get criticized for being only in it for the money, etc. etc. To which I say to these people:

THANK YOU VERY MUCH!!!

They are providing a service that I certainly don’t want to spend my life doing. These businesses have had 21 YEARS, people, 21 YEARS to comply with the law. But somehow, many businesses who would never think to blow off the building or fire codes will blow off the ADA. If some trained lawyer wants to make it his/her life’s work to call out these assholes and get compensated for her trouble, thus leaving behind a more accessible world, then I’ll stand up and give them a round of applause. Because filing DOJ complaints is such a pain in the ass that most of the time people with disabilities who run into this kind of stuff regularly just take it because if you filed a complaint every time, you would have NO LIFE. So, career ADA filers? Its a big country, go forth and conquer for the rest of us who can’t. Make no apologies for the service you are providing.

Anyway, here is my DOJ complaint. Kind of a quick and dirty one, but it is so straightforward in this case, it should be enough to launch an investigation. By the way, if they would have contacted me, said they will get right to it and put a ramp up in the next few months, I would have been completely satisfied. I mean, I like the owner of the Art Cubby, I hope she does well. I tried to be nice. But I was completely blown off. So now, not only will the ramp issue be investigated, but the DOJ (and its state equivalent, which also got a copy) will look at every inch of that place. Bathrooms, clearances, doorways, parking, everything. Enjoy that, Bitches!

***************

U.S. Department of Justice
950 Pennsylvania Avenue, NW
Civil Rights Division
Disability Rights – NYAVE
Washington, D.C. 20530

December 10, 2011

RE: ADA Title III Complaint, Architectural Barriers in a Public Building

To Whom It May Concern:

I am writing on behalf of myself, a non-driving disabled woman, and the father of my children, DXXX XXXX, a quadriplegic wheelchair user, in regards to our collective inability to access the business called “The Art Cubby,” which is located at 1500 NW 18th Ave. #115  Portland, OR 97209.

The Art Cubby provides drop-in childcare for children, ages 3-12 in a setting that fosters art and creativity. On September 16, 2011, I went to The Art Cubby with two of my children, a one-year-old, who was being transported in a stroller behind me as I used my white cane to navigate, and my 6 year-old, who I intended to drop-off to the Art Cubby for child care. When I got there, I found that there was no accessible entrance to the business. There were approximately 10 to 12 steps leading up to the threshold of the business. I was forced to bump my 1 year-old in his stroller up the stairs. My intention was to have my parenting partner, DXXXX XXX, who uses a wheelchair, come to pick up my son at a later time. When I realized that there would be no way for him to access the business, and no way for her to bring my child out to the car (as she would have to leave her other children inside and unattended) I realized that I would have to change my plans, walk two miles back from my destination and pick him up myself. Furthermore, I was concerned that other children who use wheelchairs would not be able to access this business at all.

That evening, I wrote a letter expressing my concerns (see attached) to Mike Mess, a representative of the company who owns the building called ActivSpace. I also copied this letter to Brooke, the owner of The Art Cubby. I received absolutely no response from either party. Several weeks later, I went back with my son, who needed child care in a pinch, and was disappointed to see that nothing had been done to remedy the architectural barrier. At this point, I took pictures of the barriers to the business. (See Attached.)

It is my understanding that the ActivSpace building that holds The Art Cubby and several other businesses is a renovated dock/warehouse that has been very recently renovated. Although the “loading dock” on the west side of the building is accessible via a ramp, the restaurant on the southeast corner and the east side businesses (which include The Art Cubby) are not due to several stairs. It is also my understanding that although some of the space rented in the building are not public accommodations, The Art Cubby, the restaurant and some others are most definitely businesses that are open to the public. (Attached is a Living Social promotional advertisement for The Art Cubby, that shows it is in fact open to the public.) In addition, The Art Cubby, since it provides on-site child care that includes access to an art studio and materials, cannot be accessed by those with mobility impairments in any other acceptable form.

I ask that the Department of Justice enforce Title III of the ADA by demanding that the owners of the building at 1500 NW Avenue, and the owner of the business located there, The Art Cubby, modify the premises so that people with disabilities have fair access to it. I also ask that the building owners and business owners in the building be required to participate in ADA compliance training. If it is necessary that I also demand compensation, I ask that The Art Cubby provide a community group who serves children with disabilities (such as Shriner’s Hospitals) $100 worth of free services or donation.

Thank You,

LXXXX XXXXXXX

Attachments:

1. List of pertinent names, contact information and websites.
2. Copy of email dated September 16, 2011 to Mike Mess of ActivSpace and Brooke of The Art Cubby.
3. Pictures of the building showing it’s lack of accessible entrance.
4. Copy of LivingSocial promotional advertisement for The Art Cubby.

Photos of Location: The Art Cubby at Quimby ActivSpace, 1500 NW 18^th, Portland, Oregon

East (inaccessible) side of building. The Art Cubby is the second door from the left, with the white sign on the fencing.

Stairs leading to The Art Cubby (entrance behind white sign.)

Accessible Parking at North end of east (inaccessible) side of building.

Stairs adjacent to accessible parking spot at North end of east side of building.

Standing at top of stairs to entrances of east side businesses. There are steps at either end, and no way to get to these businesses via ramp or internal hallway through other side. You can see the white Art Cubby sign at right on fencing.

Signage for The Art Cubby, obviously a public accommodation, welcoming people to enter the business.

Another inaccessible business on the east side.

Another inaccessible business on the east side.

Email

From: LXXXXXXX

Subject: Perceived ADA violations at your Quimby location

Date: September 16, 2011 10:51:41 PM PDT

To: info@activspace.com

Cc: brooke@kidsartcubby.com

Hello,

I have visited your Quimby Activspace location twice in the past few weeks to attend “The Art Cubby” with my son. I have not been able to locate an accessible entrance to the businesses on the east side of the building, nor the restaurant on the southwest corner. I did locate a ramp to the west side row of businesses, but did not see any route to get to the east side. If there is an accessible route to the east side businesses, there doesn’t seem to be any readily viewable signage that would direct a person to that route.

This concerns me not only because I half to bump my toddler’s stroller up approximately 10 steps to get to the Art Cubby, but more importantly because my children’s father is a wheelchair user and has no access (except a parking spot that goes to seemingly nowhere) to those buildings. The Art Cubby provides child care for my son. If something were to happen to me and I could not pick him up, I would not be able to send his father, either. Also, obviously their father and hundreds of other area wheelchair users do not have access to those businesses.

I was telling Brooke at the Art Cubby today that I would recommend her business to some educational communities that I am involved in. I would like to do that, but when I thought about it, I thought that I cannot do that because I know at least two children that attend classes with my sons who use wheelchairs. There may be other families in my network with members who have mobility impairments as well. I cannot in good conscience recommend a business that is not accessible to everybody.

This is a courtesy letter. I like the premise of Activspace and I want to support The Art Cubby and other small businesses. The nature of at least some of the businesses there definitely fall into the category of “Open to the Public” as I walked in to The Art Cubby under that assumption and was not given any reason to think otherwise. The restaurant most certainly is.  It also appears from your website that you have recently renovated the building (Since the 1991 ADA deadline for architectural barriers removal, so I do think the law applies to the businesses there and your business as a property developer.  I hope that you can rectify this situation as soon as possible. I have included a link to a pdf handbook for small businesses in regards to complying with the ADA below:

http://www.ada.gov/regs2010/smallbusiness/smallbusprimer2010.htm

Thank you in advance for taking action on this matter.

LXXX XXXXXXX

In addition, my dad is raising our rent to levels which we cannot afford (a sudden MUST HAPPEN, EMERGENCY increase of $280). I’m fighting it so we will see what shakes out, but in the end, we are going to have to move anyway.  Whether that ends up being in some apartment situation with D or if we expand our job search and have some success in somewhere as far as Eugene or Seattle or (I’m gonna say it…Vancouver…!!!), or just somewhere still around the metro area here, it would pretty much take a miracle for us to be able to stay here at the status quo as is right now. In a way it is freeing. “I wake from sleep and take my waking slow, I learn by going where I have to go.” says a poet whose name alludes me right now. “What falls away is always and is near…I feel my fate in what I cannot fear. I learn by going where I have to go.”

But enough of that. Great Wolf Lodge was a nicely timed reprieve. This is what I wrote on the homeschooling blog. I thought it was a nice, light cross post for here.

***************

We took Amtrak to Centralia, WA and then Centralia’s little bus service to Great Wolf Lodge on Sunday and came back Tuesday. This was a Village Home field trip and we did get the group rate, but since we were sort of separated from the group due to where they put us in the Hotel and transit issues, we did not see a single VH person on the trip. (We saw one kid and his mother who passed by quickly.) We were put on the Lobby level because of Sully, and then we could not participate in their dinner because it was back in Centralia and at that time there was no busses. We checked at their other meeting places by the pool and in the lobby for games, but no luck. I know they also met at some restaurant half way back, but of course we couldn’t do that because of the train. This kind of stuff is typical for us. Happens all the time, so it isn’t that big of deal. They drive down more or less as a group, and then they change plans as needed and we are not informed. It is a good thing we didn’t make too big deal about it, because the kids didn’t seem to care. The funny thing was, we saw another family we knew, Lisa, Orion and Akasha, who just happened to be there, and the kids ended playing with them.  Then they met these homeschool kids from Seattle, and played with them a bit, and had a big scientific discussion with experiments while in the outdoor hot tub about evaporation and condensation. Only homeschoolers.

One reason we might have missed them is that when we got there on Sunday, we had to take the 8:30 train and then got to the Lodge by 11, but we couldn’t get into our room until 4. The first problem was that although everyone else can keep their luggage in their vehicle and then just take a few things out and go to the watermark or whatever, we could not with all of our stuff on us (they refused to offer baggage holding for us, I plan to fight that next time.) We only had four backpacks, the stroller and ourselves. But nowhere to put our things, while we swam. It wasn’t really conducive to just piling them somewhere, unless you wanted to get everything soaking wet. The other problem was, and I felt bad about this, was that despite really trying, I had only slept about three hours in the past 48, I think because of job, OCB stress I guess. I was so tired that I didn’t feel like I could safely watch all the kids in the pool. I mean, my brain was starting to misfire. I couldn’t figure out left and right and simple things. We ended up taking the kids to this art/playroom and they played there for a bit. One of the staff there was talking to us and felt so sorry for us that she called and got a room for us early, by 1:00. Then Avery and I took a nap for about three hours while Nik and kids got food and watched cartoons and stuff. So, by the time we were up, I’m sure the VH-ers had gone off to their dinner. ANYWAY, I felt bad about that, but better safe than sorry, I guess. I would have felt worse if I would have let a kid drown!

This sounds like all bad stuff, but actually it was a good trip. The first day, after cartoons, we went to dinner and the kids were all excited to get wolf ears. Then we went to their story time (after failing to find VHers for games.) I think we had a lot more fun there. It was like Disney Animatronics. And they had Christmas songs and made it snow in the lobby. Avery had a lot of fun there and clapped and danced and acted like a 2 year old. Then I took Avery back to go to bed and the kids and I went back out and went to the arcade and got ice cream and went running down the convention center hallway which was kind of empty.

Monday was all water park, all day. I did not get a lot of pictures because I could not take pics and still watch kids very easily, and not get the camera wet. At first, I watched Avery and Nik watched big kids. Aaron was afraid of everything at first. They have this HUGE bucket that fills up and dumps a MASSIVE amount of water every 10 minutes or so. Aaron was hugely terrified of this and wouldn’t go near it. We took Avery to the little kid pool and he was fearless. He dumped a much smaller version of a bucket on himself a bunch of times and ran all over that place have a great time.

We then took everyone over to a big wave pool. Well, after we waited for Nik to go down one of those water raft slide things. Which worried Naim to no end. But they would not go with us, and I couldn’t take Avery anyway because he was too short for the height requirements. But everyone loved the wave pool. Avery liked being held in the waves when they toppled over him and loved the fountains they had there. I thought Aaron might freak out over the waves, but he thought they were great.

After lunch, I went back with just the big kids. And I got to go on waterslides, which reminded me of when we would go in Omaha when I was a kid. They were fun. I was only able to do this with the help of Lisa, because Aaron refused to go. But Orion got Naim to go finally. Peer pressure! Also, Orion is a pretty good swimmer, so I think that got Naim thinking about all the freedom he would have if he could swim better. Aaron is such a wimpy kid, though! Avery is more fearless than he is.

After, again with Lisa’s help, Nik got to go on the really biggest watersides, this giant funnel looking thing called the tornado. Creepy! The we went back to the room and had pizza and cupcakes for the kids’ birthday. We were supposed to have a cake, but they forgot it, so they gave us a bunch of cupcakes for free. (This is the same place we got the ice cream the day before, which was free because their credit card machine thing wasn’t working. We also got free transport to the lodge from the bus company, because I planned to get cash there, and the whole town was closed down on Sunday and we were trapped. But I did pay that back on the way back. So, we did have a lot of good karma on this trip with a lot of people helping us out.)

Then today was just getting us home. It took us about 4 hours door to door to get there. And seven hours to get back! (A driver would take about 1 and 1/2 hours to drive there, for reference.) Today our train was late, and then on the max home, there was a “suspicious device” at Willow Creek and they kicked us off the train at Merlo Road and then we had to wait for a bus to take us home. At that point, I was about to lose it. Naim had been talking for seven hours straight, and Avery was cranky. It ended up that the suspicious device was a plastic case of paint supplies. (roll eyes.)

I think I would go to GWL again, maybe next year or something (not every couple of months like Lisa!) I would try to get us at least two water park days next time. And I would also try to call ahead and make arrangements for them to store our stuff because that is just not fair. I would also go from Monday to Wednesday because it got so much better and less crowded after Sunday. Also, the store would have been open on Monday, and we could have gotten breakfast and snacks and then saved money. We planned to do that, but everything was closed Sunday, so we came with no food (and can’t carry it all.) Also, the bus we were on stopped by a Safeway, so we could have done that, or got food at restaurants in Centralia on Mondays, which would have been cheaper than always eating at GWL. The buses run longer hours on Mondays. I think I would also let the kids play magic quest, because that looked cool!

It was fun overall. Good birthday trip. I’d rather do something like that for their birthday than buy them more junk. Though it is more expensive.

When the woman was about to leave, she turned to me, handed ME her card and said, “L, don’t ever feel bad about who you are. If you ever want to learn the skills of blindness and use a white cane, you call me.” I kind of scoffed at the white cane. And she said something like, “Oh, white canes are the greatest thing ever! One little stick and a blind person can rule the world!”

I kept that card for probably six months. I was so honored that she gave it to me and not my mother. Then, I sat down and wrote her a letter on notebook paper asking for a white cane. I put it in an envelope and addressed it, but I had to ask my mother for a stamp. It sat on her desk for a while, and then she opened it and read it. She questioned me about it, I got sheepish and embarrassed and shrugged it off. The letter was never sent.

Little did I know at the time that I just missed an opportunity to connect to services with one of the most revolutionary blind rehab centers ever. The one that was run by Dr. Kenneth Jernigan, who changed the way blind rehab can be done in this country.

Luckily, Jernigan had a friend, Dr. James Nyman, who was at that time trying to copy the Iowa model in Nebraska. And I had since moved to Nebraska. When I was a junior in high school, my IEP stipulated (as do all of them by law) that I needed to pursue adult transition services. For me, that brought in the Nebraska Commission for the Blind. My mother was hesitant at best to allow me to utilize their services, but a big motivator was that they could offer tuition assistance in college. Thus, I became a client.

After graduating high school, I attended the Nebraska Center for the Blind Orientation Center in Lincoln, Nebraska. Unbeknownst to me, it had become one of the best in the country, under the leadership of Dr. Nyman. He and the staff are credited with developing a method of instruction called Structured Discovery, which includes getting orientation and mobility instruction from a highly-skilled instructor who was blind. I was a brat while I was there and the place drove me nuts. I was 17 and had a holier than thou attitude about the whole thing. I marked off on my calendar all the days until I could get out. When that day came around, though, I was rather sad to leave. I had an inkling then, and would later come to be grateful that going there was one of the best things that ever happened to me. It is hard to imagine where my life would be if I had not gone there. I doubt I would have been successful in college, I would not be as self-assured as I am now, and I sometimes even think that if I had gone as a progressively more deaf blind person without it, I may have committed suicide.

The program, where I lived with other student roommates in an apartment a bus ride away, consisted of 5 day week, 8 hour day classes that, since I had residual vision, I attended entirely by wearing a blindfold. I took cane travel, home ec, Braille and Computers, Wood shop, and Seminar (which we always called coma-nar or semi-snore). Seminar was basically group therapy that some–even I would agree–was brainwashing of basically National Federation of the Blind philosophy. But although it was a bit brainwash-y, it is hard to get too upset that they were trying to brainwash us to believe in ourselves, to trust our competence and abilities, to know our worth, to be assertive, to demand respect. That’s what it basically was. No whining was allowed.

I learned the very first day of class that I was not going to be coddled. They told me I had to get to the bus stop from the apartments by myself. They gave me the intersection and directions–it was about four blocks away–and when I asked if anyone was going to walk me there, they told me to ask my fellow students. Then, that day everyone just happened to be going to a U-pick farm for a field trip. I spilled out of the van with my sleep shades on and my white cane and panicked. I kept asking for this or that instructor to walk along beside me. Basically, I whined a little baby girl whine. I was ignored. They just said for me to ask if I had questions.

Everything we did culminated in some kind of project. In home ec, I had to cook a four course meal for 8 people. I actually made egg rolls from total scratch, including the dough, and deep fat fried them (the one and only time I’ve ever done that. Now I’m all frozen egg rolls, anyone?) I had to make a project in shop, in which I made a doll house. In computers I had to write letters to my college and to Recording for the Blind to order my textbooks for the following year. In Braille, myself and two other female students traded off writing chapters for our “erotic” novel (to be young and not care if you are totally unprofessional!) For cane travel I had to participate in a series of “drops” where someone drives you around for awhile to get you confused and then kick you out of the car and make you find your way back. In sewing I made a small quilt and pillow. We also had to do things like go horseback riding, hiking, rock climbing and other field trips.

Once, we took a field trip to the Blind Center in Kansas. I remember the facilities being very nice. But everyone we talked to couldn’t do anything. Like, in cooking they were all so excited to be able to make a sandwich, and they didn’t have a gas stove like we did, only a microwave and a electric skillet. We had a gas stove on purpose, because people said blind people shouldn’t cook on a gas stove. Little stuff like that just gives you a little kick in your self-confidence. The Kansas people also participated in a sheltered workshop next door. They made things like the basket material on basketball hoops, and they all gave each of us one as a gift. We were a little dumbfounded, but tried to be polite. They were so proud, and they all participated to get “vocational skills” but the truth was, many never left the sheltered workshop, and they got paid sub minimum wage. None of us could imagine ourselves ending up like that.

I will say here that the clients in Nebraska were not all super blind people. Blind people often come from not the best educational circumstances. Many, especially those who lived their lives at the State School for the Blind, really had poor skills (except their Braille skills, State School kids always had great braille skills, but they couldn’t do anything else and they often had very poor social skills.) Also, some people who are blind also have other disabilities that affect their functioning such as brain injuries or cognitive disabilities. Some had literally been sat in their room their whole life with books on tape, very educated and well read, but with no real life competencies. Some of my classmates became, vending machine operators, dishwashers, janitors, or call center operators. Others became lawyers, nurses, teachers, mechanics, and professors. Some were chronically unemployed. Pretty much just like the general population. But everyone left with basic competencies to live independently and NO one ended up in a sheltered workshop, including those with developmental disabilities. It was unthinkable. We were blind and it was respectable to be blind. We were not inferior. Why would we have and inferior job with inferior pay?

Things that had the biggest affect on me there were stuff like:

• Sleepshades. I would not have learned anything without them. In addition, it gave me the confidence to not be scared to lose more sight. Although I can’t say I look forward to losing more sight, I know that I will be ok, and it is because of sleep shades. (Though they itched.)
• The fact that right alongside us were newly hired staff members who were required to do three months of training with sleep shades as well. They were given absolutely no special treatment or privileges. They were just like us, and they were expected to master the skills of blindness, even if they were going to be a voc rehab counselor in Scotts Bluffs.
• The fact that my O and M instructor was blind. If he had been sighted, I never would have gained the confidence to travel without sight. He also couldn’t give you a lot of hints if you were stuck. (Or wouldn’t). He would only ask you questions and make you figure it out on your own, even if it took you an hour to cross a street.
• Dr. Nyman refused to hire anyone with an O&M degree, special ed degree, or rehab degree. He felt they were ruined if they were. The criteria to be an O&M instructor was that you had to demonstrate excellent travel skills without using vision. This didn’t categorically knock out all sighted people, but it effectively did. We didn’t have to learn all these three point turns and weird crap that college-trained rehab teachers taught. We just were taught to use our heads and common sense. (He also hired my computer instructor, who was sighted, because she got arrested for civil disobedience for a direct action protest she participated in. He didn’t like anyone who drank society’s kool-aid or kissed ass too easily.)
• Blind leadership. Not everyone that worked there was blind, but the majority were, and they held leadership positions. There was nothing patronizing about being there. They had high expectations for us because they knew it affected them. Civil rights improves for no one if there aren’t blind people who have self-worth and skills and can fight for themselves.
• Advocacy skills. One thing we did in seminar was discuss all the weird ways we were treated and talked to by the public and how to respond. There was never a lack of material. They were very much social model based. The problem was attitudinal barriers, not being blind.
• Comraderie. They encouraged you to rally to help each other. The first night I was there, when I had to go ask another student to walk me to the bus, I met my late friend, Susan. I had really never talked to another blind person before. It was like the flood gates opened up and I felt a comfort with another person I had never known. They encouraged you to give back to the community by helping another blind person out who needs a job lead, or help with a resume, or a letter of rec or whatever. They taught us the strength in numbers. The amount of ad hoc work that I’ve done pro bono (and so has almost every other disabled person) to help disabled people work a system, fill out forms, learn a travel route, find a job, practice self advocacy, etc. would make me rich if I were paid even minimum wage for it probably. They taught you to network.

When I think back at the overall attitude and energy of the Nebraska Center, it was lively and jumping. The blind people in Lincoln were diverse in personality and skill level, but they all had a baseline level of knowledge and confidence in themselves. This was what it meant to be blind, and it was pretty good.

My beliefs about blindness were reinforced when I was in grad school in Kansas. I met three people who had gone to Louisiana Center for the Blind, another top rehab center, this time privately funded by the NFB. We had a fourth girl in our group, but she did not attend a good training center. And although she was competent and skilled enough, she was always so fragile about her blindness. She had no confidence, she was thankful for any scrap of help she got, and when she didn’t receive fair treatment she was afraid to fight or make waves. She got a Ph.D in foreign languages and could not order her own pizza. She could have been an internationally traveled interpreter and she ended up being a volunteer receptionist at a church. She was a nice girl and she hung out with our group, but there was a deep chasm between us and her. We tried to encourage her, but her parents were so afraid of her making waves or seeming to have attitude or being ungrateful that they scared her into a self shaming submission. Oh, well. You can’t win them all, I thought. But I still thought that the blind people I knew, the ones I lobbied congress in Washington with, the ones holding their canes over the baggage corral and getting their own damned luggage and then taking a bus to their hotel at the conventions, were the norm.

And then I moved to Oregon.

The metro area that I live in is 3 times as big as the other cities where I found the cool blind people. The transit is better, there are more opportunities, more to do. It is more cosmopolitan here than the midwest. I expected to, at some level, hook in to the blind network here. And it really hasn’t ever happened. And I haven’t really been able to figure out why. In the last few years, it has been due to total lack of bothering to, but I only got that way because of so many disappointments before.

My disclaimer is that yes, there are competent self-empowered blind people here and I have met some of them. There are probably more that I don’t know about. But you have to really really hunt around in the haystack to find them. And that seemed odd to me. When I went to my first advocacy meeting when I moved here, I asked the president of the group how to get to the meeting. Which bus? He said he didn’t know, he got a ride or took a cab. This was practically sacrilege in my blind world. It wasn’t that rides weren’t welcome sometimes and cabs are sometimes necessary, but to NOT KNOW WHICH BUS? Wha? How? Huh??? What if your ride’s car breaks down or your cab doesn’t show or says he’ll be an hour? You gotta have back up! Self-reliance! And you, as president have to know about buses to tell others, right? And when I attended the meeting, there were only about 5 people there and they were just lethargic. No fire, no agenda, no resolutions, no fight. It was basically a pizza party.

It became a bit clearer to me when I made my first trips to Oregon Commission for the Blind. The Nebraska Center always seemed bright and energetic and happy. And many times, loud. Canes a-tappn’ people talking, places to go, things to do, jokes to laugh at, plans to make. I walked in there and it was just dull, grey and silent. There are always a few blind people milling around but they are almost invisible. Somber, sad. It reminded me of a part of the SCI rehabilitation hospital in Denver, Craig Hospital. Craig hospital has three main areas. A newly injured intensive care type area, a inpatient rehab area, and a sort of “half-way house” apartment area where patients spend their last days of rehab before they return home. The latter two rehab areas were always lively and fun and lots of positive energy and action. The ICU area was like walking into this whole different world. This was where patients were just coming to grips with the shock of what happened to them and many times still fighting for their lives. There is uncertainty and depression. Their families are quiet and contemplative. I know it is not the same thing at OCB, but that is what it feels like when you walk in the place. Uncertain, still, depressed, lethargic, shameful.

The next thing I noticed was, to varying degrees, the counselors have very low expectations and really don’t believe in their clients. There are better ones and worse ones, of course, but there is just this sort of defeatist, ho-hum, so what attitude there. You sort of felt like you were part of an exciting revolution at Nebraska, it was fun. I have to tell you, I dread setting foot in Oregon now, and I have avoided it at all costs. They have gotten me two sets of hearing aids, for which I am grateful, but as far as helping me advocate for myself as a blind person? Nothing. Worthless.

I have not officially attended their training center as a full time student. I can’t say I know everything about it. But I feel like I’ve seen enough. When the twins were born and I lost all of my sight after my retinal detachment surgeries, I took computer classes there. The teacher was competent and respectful, but it was pure drudgery. There were four students in little cubicles, including myself. We didn’t hardly talk to each other, we were all doing our own thing. There was no camaraderie. I basically sat there and taught myself JAWS. I mean, she helped me and gave me lists of commands and stuff. But there was no assistance when things got tough. One thing I do a lot of is shop online. I wanted to learn how to shop online with JAWS. It is painfully tedious at first, although there are shortcuts you learn after a while. Instead of scanning or skimming the page like a sighted person would do, you have to work the JAWS program through every. damned. word. on the page. I got so frustrated I gave up. I had these new babies, I lost my sight, I worry about how I am going to get things like diapers and formula if I can’t shop online. Am I going to have to go on the bus with my double stroller and two babies and then carry everything back home? She did nothing to motivate me. She just let me give up. I know in the end it is my responsibility to motivate myself, but sometimes you need someone to push you and give you that confidence that you will figure it out. She was not there to do that. She was very much take it or leave it. Even though I had my weak moments, thank god I had my Nebraska training to fall back on. With my second wind, I knew I could do it. I eventually went home and taught myself. But what if I was newly blinded and didn’t know any better? What if I just gave up and thought blind people just can’t shop online or really use the computer as competently as a sighted person? How can that bode well when I’m thinking about employment or trying to convince others to hire me?

I have not really dealt with them until Nik moved here. Then he decided to seek out help from the commission. My first thought was “what for? They’re worthless.” But then I decided to play nice and be open minded. Besides, it has been years. Maybe things have changed, or maybe Nik won’t find them to be so worthless with such low expectations and faith in blind people? I decided to remain silent. And watch and see what happened.

So, he comes back after his first visit and walks in and says, “Oh my god that place is pathetic!” He found the vibe there just as depressing as me, and I never said anything about it before. Then, showing that nothing has changed, he even talked to the employment specialist that I got into a big fight with like 10 years ago until she turned me over to another counselor, I, who low and behold was assigned as Nik’s counselor. I is not too bad, she is ok and means well and I think she tries and I think she genuinely cares about her clients. But even she says little telling things. She was so impressed that HE FOUND HIS OWN WAY to the commission ALL BY HIMSELF!!! Um, how do blind people live if they can’t find places all by themselves? he did ask me for directions and I gave them to him based on my memory, I’m sure he knocked around a bit till he found the door, but then…that is that. Its not hard. It is about knowing you can. And this other woman, the one I got into a fight with and the one that every time I mention her name to my former boss (who has done several trainings with her) she lets out a string of disgusted profanities about her…well, we have actually decided that she is a detriment to Nik getting a job. Not useless, WORSE than useless. Her job is to go out and network with employers and connect blind people to jobs. And she is about the worst advocate ever. We even heard that she was giving some spiel to an employer and the employer said something to the effect of “I was really open minded about hiring blind people when you first walked in, but you have completely turned me against the idea. You have presented them like pitiful charity cases and have told me about all these government subsidies I can get to hire them, but you have done nothing to tell me what blind people can do for my company!” We started to see that the job applications where he told her about them and she said she new a contact that could pull his application, did worse than the jobs that he didn’t tell her about.

Then their was the travel instructor, who calls himself a parapatologist or some obnoxious shit and has a master’s degree in rehab which of course makes him, in Dr. Nyman’s estimation, completely disqualified to come within 20 feet of a blind traveler. Now he is all into urban planning and traffic signals and intersection layouts and all that. Which is fine. Those are some issues that can be addressed. But it is all about the external environment and how it needs to change for blind people, instead of teaching blind people how to be skilled in ANY environment. And the fact that he can’t teach a blind person to travel out of a paper bag. When Nik first moved here, I was spending a lot of time telling him directions and walking him through tough intersections. I suggested that he could get this guy to help, since he was working with OCB anyway. After a phone call or two, N says, I’ll see him if you want me to but he can’t help me. He doesn’t know what he is doing and he knows nothing of the technology I use to get around. I’ll just figure out the area for myself. And although he still sometimes asks me directions for things and I verbally take him through an intersection, he has. He has taught himself PDX all by himself, and that while pulling a stroller behind him half the time. Because it isn’t so much learning the specifics of the town, it is having the confidence in your own skills to know you can do it. And Nik has that in abundance.

And then there was this job. And this job is the reason I’ve been thinking about this and this post.

So a job opened up at the commission for a technology instructor. And this is right up Nik’s alley and something he has always wanted to do. Now, I has been extremely encouraging about this job. She has really stuck her neck out for him to get it. And we thought, yeah, this is a job that is going to bring all the blind computer nerds out of the woodwork, there is going to be a lot of competition. But I said that there really was no other client with the skills to do it. Huh? That doesn’t say much for your program, does it? None of your blind people have the skills to teach other blind people how to use computers?

When he applied for this job, part of me didn’t want him to get it, because even though I knew that he would like parts of it and that it would be a good job, I was afraid that the place in all of its low respect and expectations of the blind would drive him insane. But, there was a promising new (blind) director and she seemed to want to breath new life in the place. She wanted diversity and advocacy and new blood and new energy. The competition, cut from 600 applications, fell on two. Nik and a person we will call S.

So, you know how this is going to end up, right? Nik didn’t get the job. But before I go any further and tell you how you can be discriminated against for being blind when the person who got the job is also blind, I will just say this: Although of course it is disappointing, I have nothing against S and do not begrudge him the job. I do not know him, know only of him and he seems competent and I’m sure he will do a good job. What I know of him (and I don’t want to give too many details) is that he has been a contractor for them for awhile and they know him well. Also, my impression of him (and I could be wrong about this) is that he is a compliant, non-make waves-er. He is also a heavy duty computer geek (I mean that in a good way) with not a lot of teaching experience. So, I don’t want this to seem like sour grapes, because what has me thinking about all this is not him or that HE personally got this job. I wish him well. It is more the reason we were told he got it exemplifies the low expectations and unwillingness to change that OCB seems to have.

Nik was told that although he (Nik) was more qualified for the position, they wanted someone who could jump in and start right away. This really confused us at first because it seems so incredibly short-sighted. Why would you forsake a more qualified applicant just to save yourself a few days of orienting him around. This is teaching JAWS to students. It is something that Nik could do blindfolded (HA!) and with both hands tied behind his back. Sure, there is probably some procedural stuff that he would need to learn, but could he jump in on the first day and teach JAWS and keyboarding skills and stuff? Yes, absolutely.

So, setting aside the speculation that this is all about politics and they wanted the more compliant guy who doesn’t want change for the center (because I’m only speculating on that one, I don’t know what S has planned) here is why I feel like this is blindness discrimination even though S is also blind. (Not that this would ever be understood by anyone except blind people or in any court of law.)

So, Nik looks at this like any new job. You jump in and start working, but yeah, the first few days you have to ask a lot of questions like where is the USB cord for this or that and which students do I have today, and maybe the first few weeks have some procedural stuff that you need to learn. Typical new job stuff. It seems like since the place is pretty low-key and slowly paced, not like, say, a hectic urban ER, that a little bit of orientation would be worth the more qualified candidate.

But then I thought of Wells Fargo calling up and being all worried about how he would find the bathroom. Would someone have to take him each time? And I thought, no, I bet what they thinks is that whatever familiarity S has with the place and the procedures and the location of the USB cord and the class schedule probably took him MONTHS AND MONTHS to learn. Why? Because he is blind! Blind people can’t do anything as fast as sighted people! We are going to have to coddle Nik through this like a client. Whether S would or wouldn’t need so much coddling is probably irrelevant. They just BELIEVE that is what it would take. Oh, MY GOD! S already knows where all the computers are and has used them before and we would have to sit there for WEEKS and WEEKS and show N. Because blind people are slow and incompetent!

Ok, so most of me thinks I may be exaggerating because I think this is a bullshit reason anyway. I think the real reason is that N is crazy competent and for some people out there, especially a particular segment of the disability industry, that BUGS the SHIT out of them and scares them silly. Either consciously or unconsciously. If blind people can really be just as good or better than sighted people at these jobs, then what will they need ME for? They are already trying to make these centers have more blind directors!!! Then I’ll be out of a job! And what would happen to my whole world view that I am helping these poor pathetic creatures? There are lots of good people in the disability field. But there is a segment…and there is one or two everywhere…that loathe their clients and can’t stand the thought of them upstages them. And no offense to S, but N’s competence intimidates people there. Certain people. They are the same people that are intimidated by myself and a few other highly skilled blind people. They will NEVER let them in.

It would not take too much to make OCB great. The funding is there, the facilities are there, they have some good people. But if they cleaned house and got some highly skilled blind people in there to really raise expectations and KNOW in their hearts that the blind are respectable, they could completely change things for their clients. The problem is, the top is going to have to RETIRE before that happens. We shouldn’t have to wait that long. Yes, I am disappointed by the job thing, but that has really mostly already faded and we will move on from that. What disappoints me more is the raw deal that the blind people in Oregon are having to put up with, and a poorly skilled blind population ruins it for everyone else, too. We get a bad rap. But onward ho!

(yeah, I went there. I really have no dog in the OCB thing and it needs to be said by someone who doesn’t have to kiss up to them to get services. But now I’m sure I officially will have to move to a new state or country to ever get blind services again.)

ETA: So I took this down because I thought it might cause too much political trauma, but then I started reading about all the audit trouble that OCB is in, and the director’s response to that, which was nothing. And then over the weekend, Nik started questioning, like we all do, what he did wrong over the interview process. I thought it might have been that he didn’t give good responses to the questions about how to teach folks with very low abilities, which I prepped him on because he doesn’t have a lot of experience and I do. I can teach anyone anything without being too unhinged by what level they are at. So he thought he was ok, there. But Nik thought it was that he talked so much about advocacy, and that skills were one thing, but believing in yourself and advocating yourself to others was just as important. He thought director did not like that and that she thought he came off as arrogant. Not being there, I don’t know. But there is telling them what they want to hear in an interview, or keeping your opinions on the low-end of controversial, and then there is selling your soul. If advocacy and believing in yourself are controversial, then working there might have been more soul-killing than he could stand. In the end, shit needs to be said. So I’m saying it.

EETA: Ha! Or as our blind friend from Toronto said when Nik told him about it, “Too normal for them, were you? They hate that. You can be totally blind and yet not be blind enough!”

• Avery is behind because he is Swedish. Naim and Aaron are not behind because they are Russian. Swedes are slow, Russians are smart.
• Avery is not behind at all. He is perfectly fine. We just ignore him.
• He is behind because we don’t read to him. We need to start reading to him.
• Nik should have just explained how JAWS worked to Wells Fargo. If he would just tell them that JAWS makes the computer talk, they would hire him.
• Did Nik apply to Yahoo!? (Yahoo has a call center blocks from where we live. It is one of the first places he applied to.) Nik should apply to Yahoo! They would hire him. Then he could walk to work. (repeated attempts to say that he did apply multiple times go unnoticed). Did Nik apply to Yahoo!? He should apply to Yahoo.
• Naim can’t read. (Then Naim reads him a book, stomps upstairs all pissed off and tells me that Grampa Fred says he reads too slow.) Naim reads too slow.
• Naim, Aaron, your cousin is on the Biggest Loser. (blank stare.) What? Don’t you like your russian cousin? (Apparently, there is a Russian on that show, the Biggest Loser. Since we don’t have TV, the kids have never seen that show and don’t know what he is talking about. And although they know they have Russian roots through Sergei, it is hardly something that is in the forefront of their lives.)
• Nik needs to learn how to be an asshole American. Swedes and Canadians are too nice. He isn’t going to get a job here unless he learns how to be an asshole, like Americans are.
• Susan says “[a running commentary of either basic or shitty advice about my kids who she has met a couple of times for a few days each, over a year ago]” This is all expert advice because Susan (his partner) was an elementary school teacher in 1965 for two years.
• Susan says, “‘
• Susan says, “”
• And did I mention, Susan says, “”
• What is your blog’s URL. (I’m not telling, find it yourself.) Forget it then, You write too much. I don’t want to read all that shit.
• Sully (the guide dog) needs to learn how to pick up his mess. Why don’t they teach them that at school? (in response to his dog fur.)
• Who moved my couch? What did you move the couch for? The couch should be over here. I don’t like sitting on this little couch. Why did you move the couch?
• When I went to say goodbye to him, the last thing he said to me. “I’m cutting the electricity off in January.”

Learning about homeschooling in Vancouver was fascinating. On the surface, it looks like there are much more choices there. But scratching deeper, it actually is a system with a tremendous amount of oversight. There are two basic choices in British Columbia. The first is to annually register your child as a homeschooler in his/her local school. Once that paperwork is filled out, there is nothing more to be done. You have no obligation to the province and the province has no obligation to you. The other option is to enroll your child in a distributed learning program either in a public program or an independent one. (Independent schools in Canada are a weird public/private hybrid. There is no hardline separation between church and state or public/private schools in Canada. Interesting, but for another post.) Many public and private school districts offer distributed learning options (or DLs for short.) They can be online classes, or learning-at-home classes, or a combination of those with brick and mortar classes. DL students are considered public schooled students, not homeschooled, even if most of their instruction takes place at home. The curriculum is monitored by the province, the delivery of that curriculum is left up to the family and the Learning Consultant, a certified teacher that consults with and monitors the student. The advantage to DLs is that they provide the students funding for books, classes, computer equipment, etc. Many families there say that they couldn’t homeschool without the DL’s financial assistance. But these students get grades, take the same (or very similar) classes as PS students, and are considered public schoolers. There are a lot of different DLs out there and many have very neat programs. There are some independent schools that are dedicated to being a DL. That’s all they do. Some offer families A LOT of leeway about how they teach their kids (there are even unschooled DL-ers, believe it or not.) It seems to depend on your program and your assigned learning consultant how much freedom you have. I can’t say that the money isn’t attractive, and some of the programs had some really neat stuff, but the oversight gave me a bit of the heebie-jeebies. In the end, I’m a rebel at heart.

But contrasting Canada with Sweden, and you have the reason I could never raise my kids in Sweden. Not only are what you NAME your kid strictly monitored, as well as beign required to put your child in some form of child care at age one, homeschooling is illegal in Sweden. So illegal, in fact, that a child who didn’t start school in Sweden in September because he was moving back to his mother’s native India in November was removed from the plane to India and taken into protective custody. This child remains in foster care nearly two years after this occurred, essentially blocking his family’s planned emigration out of Sweden. Except for cases of severe medical circumstances (when a child is assigned a home teacher) there is no homeschooling in Sweden, which follows a national curriculum. I find national curriculi to be absolutely illogical, because first, there is no set of information that is the end all for everyone to know. There is no way to teach everything, so any curriculum at all picks and chooses arbitrary things. If everyone in the country learns the exact same thing, then you have a whole lot of people who know nothing about anything else. Students need the tools to go after what they want to learn and what best compliments their gifts. In this way, a society has a patchwork of people with diverse and complimentary expertise who can collaborate together in a Gestalt kind of way and develop innovations and evolve into something better than they could on their own, or if everyone grew up learning the exact same thing.  All the educational research on the planet supports that humans only truly learn what interests them anyway, and thus those that learn well in the national curriculum get ahead and those that don’t (but could excel in other areas) get left behind and are wasted talent.  Some basic reading, language, math and research skills? Sure, I could handle that. but any National (or even state or district or school-wide) curriculum to me is not good educational policy.

However, even though the rules for homeschooling are pretty liberal in my state, and I am not required to do anything except make my kids take a test no one will likely look at, I’m paranoid of governmental interference. It comes from years of being “assessed” myself as a disabled person, and seeing all the screwball conclusions that this leads to. That, and once you’ve been threatened with the removal of your kids because as premies they didn’t eat well at first and of course this is because I was too blind to feed them, you start documenting your work. For my own protection, I have kept records of what my children do for school. I save their workbooks and some of their work for samples. I keep a database of classes and curriculum. I have a homeschool blog* (recently re-invigorated…I’m not perfect!) to keep track of what we do each day. This is for my own assessment purposes, to see where we’ve been and where we are going. But it is also so that if I ever get threatened again (“A disabled parent can’t homeschool! We are taking your kids!”) I will have mountains of evidence of their progress and rich educational lives they have lead.

What made me think of this now is that I have been reading the two books by Carolyn Jessop, called Escape and Triumph, which detail her life as she was born into the FLDS cult and how she escaped. This is the group that Warren Jeffs was the “prophet” of before he was sentenced to double life sentences for the rape of an underage girl who was made one of his many “spiritual wives.” Jessop was born and raised in the cult and was married off at the age of 18 to a man 32 years her senior that she barely knew. She was his wife number 4 and stayed with him through 17 years of marriage and 8 kids. She escaped with all of her children in the middle of the night with $20 to her name. She is the only woman to escape the cult with her children and subsequently gain full custody of them. It is an amazing story that shows really cruel and sick abuses, but also her incredible courage and resolve to escape the lifestyle.

In the second book, Triumph, which I am still reading, she has a chapter where she comes down on homeschooling extremely hard. One of the advantages she had as an escapee is that she was allowed to go to school and get a college education (although not in her field of choice, medicine. Her major was dictated for her by the cult.) She earned a degree in elementary education, and went on to teach second grade at the public school in Colorado City, AZ. The city, the police force, and the school district were all run by FLDS men. Religion was openly taught in public school, and beatings were common. Many students were not allowed to go on to high school, or were taken out routinely to work for wages they would turn over to the cult. (She was required to turn over all of her teaching wages to her husband.)  When Warren Jeffs came into power a few years before her escape, he radicalized the cult even more. He closed the public schools and required everyone homeschool their kids. He also required that outside books be destroyed, and most kids (or their mothers, the main homeschool teachers) were not routinely allowed to leave the city. Their cars (if they were allowed them) were stripped of their license and registration, and as the police force was all FLDS, they did not ticket them in town, but they would be stopped if they left town. Clearly, this is not a situation that is conducive to homeschooling success.

Jessop credits her ability to get an education and briefly leave the confines of Colorado City to go to nearby Cedar City to college as essential to her psychological transformation that led her out of the cult. She also saw some of the effects of crappy schooling that her own children suffered at the hands of the FLDS. Some went to the public schools and eventually all were homeschooled. When she enrolled them in public school in Salt Lake City after her escape, she found they were quite behind their age-level peers. Her chapter that is very critical of homeschooling has gross misconceptions and innaccuracies about homeschooling. One can understand why she came to these views, seeing the damage that forced homeschooling (which was really just a code word for banning any and all education in the cult). What they were doing there could hardly really be described as homeschooling. All books banned but the Bible and Book of Mormon. No free escape from the town. No outsiders allowed in. The only “teachers” available are those that are under oppressive subjugation; as well as the students. But this type of thing was happening (albeit possibly to a lesser degree) when the FLDS kids attended public school. You wonder why she doesn’t have the same criticisms of public school if she is going to base her opinions solely on this dysfunctional FDLS Colorado City environment. Public and FLDS sponsored private school students were beaten, coerced, censored, and mind-controlled as much as they seemed to be in homeschool, based on her descriptions. Where was the public school accountability? Where was the public school education and socialization that she complains is lacking in homeschool environments?

Her homeschooling criticisms don’t hold water because the public and private school options in Colorado City were just as fucked-up. The problem was not homeschooling, the problem is cult control. However, her concern about accountability in homeschooling is understandable  in that it is arguably easier to hide what is going on under the guise of homeschooling. One wonders what the hell the State of Arizona and Utah Boards of Education were doing in letting the Public School abuses go unchecked, but at least there is SUPPOSED TO BE oversight in PS. Whereas the oversight for homeschoolers is tricky and vague.

A criticism I often hear about with homeschooling is just this. Although I know that the majority of homeschoolers are getting a decent if not exceptional education, there are the stories of kids being taught creationism and junk science, kids that are truly truant and running the streets, or most horribly, kids that are being abused and locked in the attic somewhere. The reality is that most of these situations (decreasing in freqency, respectively) are not the norm. As a homeschooler it is easy to wave off these criticisms as inconsequential because you know that this is not what is happening with YOUR kid or all the homeschooling kids you know. As far as kids running wild or being abused and locked in an attic, it is hard to really think that, “oh, if homeschooling was banned, then these kids would just magically appear in school problem-free.” There are much bigger problems than ps can cure. Troubed or abused children are stuck in a network of social ills and societal neglect. As a teacher, I’ve seen how LITTLE the public schools can really do to get these kids out of bad home situations. Although there may need to be huge reforms in how society deals with troubled and abused kids, banning homeschooling is not even remotely an answer to this. Whereas banning homeschooling would drastically decrease innovation and democracy in education in our society. Truly throwing the baby out (while doing nothing to drain the bathwater.)

However, this is the first time I ever really thought of a whole town with several thousand people whose children are basically being denied an education al ALL and then calling it homeschooling on a systemic level. And even though I am not teaching my kid to ignore science and locking them in the attic, I do feel a responsibility to do my part for all kids. This means, that as a homeschooler, I can take a bit of oversight if it means saving a kid locked in an attic or a whole town’s worth of kids losing their right to an education. I think there is a way to respect democracy in education and also provide social services to kids who are being abused or neglected. I see this as something like yearly or bi-yearly spot checks, that might possibly include both PS, private school and homeschooled children. Schooled children would have this done at the school setting (which it pretty much already is, although arguably there is variance on the part of private schools on quality and reporting.) For homeschoolers, the family can be called for an appointment, you go in, you and your kid get interviewed both separately and together, and perhaps you turn in (your option) test results or a portfolio of work or a presentation of some sort of what activities you’ve been up to. Social service information and referral could be made available as well as abuse hotlines to kids and shelter information to parents, etc.

The key to this is in the criteria. The interviewer has to be objectively looking to see if the kid is doing OK. Just OK. Not whether the kid is the top of the percentile ranks, not whether he or she is reading at grade level or doing whatever level of calculus the interviewer thinks the kid should be doing. But basic questions such as:

• Does the child show evidence of abuse or report abuse?
• Is the child getting necessary medical attention and nutrition?
• Does the child seem emotionally healthy and stable? (given consideration of any medically monitored mental illness).
• Does the child have access to books, resources, media, people, environments and other sources of information with which to learn?
• Is the child able to show demonstrable progress year-to-year? (given consideration to age, learning styles and disabilities)
• Does the child feel like they have an appropriate level (based on age-appropriateness) of free-will in regards to their live and educational goals?