The Politics of Blindness (Part 2) Why Jaime Can’t Tie His Shoes

I know that my acronym soup ranting about blind services is not of interest to many, but having put it on the internet and having learned more information, I feel the responsibility to make some amendments to my previous post, The Politics of Blindness. By the way, I learned that even with a bluetooth keyboard, I don’t write so well on my iPad. I’m desktop now, baby!

When I lived in Nebraska, my best friend was the director of the training center of the Commission for the Blind there. I was pulled in numerous times to teach particularly challenging students that needed extra assistance that the center was struggling to provide. Most of the students I worked with were very young, just out of high school, and blind since birth, as these were the ones that usually had the most catching up to do. I taught Braille and orientation and mobility mostly. Sometimes I taught the simplest things, like how to carry a bowl of soup so it doesn’t spill, something some of these blind youth had never been allowed to do before. Once, I taught Jaime how to tie his shoes. (If I’ve told this one before on this blog, bear with me. It is a bit of a famous story.)

Jaime,was a 6’2″, probably 240 lb. 19 year-old who grew up in a small public school where his aunt was his teacher for the visually impaired. He was really, really smart, but had never been taught Braille. Braille has never been my strong point, so when I taught Jaime Braille, I had to RACE to keep up with the speed in which he was learning it. The only thing that saved me was that I was having him learn it in Grade 1 (uncontracted Braille) so he could practice his spelling, writing and grammar at the same time. He had never been taught how to write, spell, or edit his own writing before. I also worked a lot with him on things like table manners, because his teacher/aunt would have him eat alone in a classroom rather than in the school cafeteria because she thought the cafeteria was too challenging for him. We would go to restaurants and work on things like buffet lines, passing around food family style, not chewing with your goddamned mouth open, things like that. Jamie was fun to talk to, because like a lot of blind people, he was incredibly well-read. He had spent much of his school years listening to talking books. He liked history and politics, and could talk circles around me about the whole impact of the fall of the Soviet Union which was happening at that time. I knew the current state of affairs about that, but he could delve into the history of all the players going back centuries. To be honest, although I could read and write circles around him, Jaime was smarter than me.

Being a big guy, Jaime had big feet. And he always wore these worn-down, hole-filled tennis shoes. I mean, his toes were sticking out. One of my roles was to help Jaime kind of get with it socially, so I told him he needed to get new shoes. He said he couldn’t, because he was having a really hard time finding shoes that didn’t tie. “Why do you need shoes that don’t tie?” I asked, noticing for the first time that his shoes fastened with a velcro strap. “Because I can’t tie shoes, you know, I’m blind.” He replied a little indignantly,  like I was stupid. “It is hard to find size 13 wide shoes for men that velcro,” he said.

After I put all the bits of my obstrepital lobe back into my skull, I took Jaime shoe shopping, and we picked him out a pair of shoes that tied. And right there in Payless, I sat down on the floor while Jaime sat on the bench and we worked on shoe-tying. We spent, maybe all of 45 minutes to an hour there, finding his size, picking out shoes, learning how to tie them and purchasing them. The next day, my best friend who saw him checked out his shoes in the morning, and they were tied. Problem solved.

Sometime later, he and I got into a discussion about being discriminated against while blind. He said, “That has never happened to me, I have never been discriminated against for being blind.” I was all aghast, and eyes rolling, arms waving, I cried, “Jaime! No one ever taught you how to tie your GODDAMNED MOTHERFUCKING SHOES for NINETEEN YEARS!!! THAT is discrimination!” I could tell a little lightbulb went off in his head, but it was a painful light. He teared up. “God,” he cried, “You don’t know how much I got made fun of for that in school. And how embarrassing it was to go into shoe stores and ask the men sales clerk if they had velcro shoes in my size.”

It was not the right time to mention that he was also discriminated against because he was not allowed to learn to read and write, do math or higher level science, enjoy sports, or eat and socialize with his peers. This is a kid who could have gone to college and be anything he wanted to, but he had a lot to overcome at nineteen and not a whole lot of support to overcome it. He ended up working as a dishwasher/busboy in a university cafeteria, which he really ended up liking because he liked to talk to the students about their classes and stuff. It is an okay outcome, I guess, but I always thought he should be the one sitting in the cafeteria eating between classes on world history and political science.

By the way, his aunt was supposed to come speak to one of my special ed classes about blindness. I told my professor that if she showed up, I would refuse to come to class. When she asked me why, I told her about Jaime. My best friend ended up coming to speak to the class instead.

This is a famous story because it so well illustrated what I think is the numero uno main big major problem for blind people: low or nonexistent expectations of our abilities. This is what caused Jaime not to be able to tie shoes for 19 years, not blindness. This is what caused him not to learn to read or eat properly or go to college, not blindness. It is ingrained in society that blind people are helpless and cannot do so many things to the point where Jaime’s aunt, who probably loved him and was trained to be a special ed teacher for the blind, could not even see a world past it for Jaime. She probably took him as far as she could, but it was HER limitations, not HIS, that left him so ill equipped to deal with life.

So, when Nik worries about whether he can work at the OCB because their expectations are oh-so-low and they make disrespectful and uninformed comments about their clientele, I tell him, “Just remember why Jaime couldn’t tie his shoes. They will say it is because he is blind but you know better. Just focus on teaching the Jaime’s you come across to tie their shoes.” The OCB, despite their audit mess and their Blind Enterprise mess, has only one problem: They have low expectations for the blind. They accept society’s paradigm that the blind are incapable of going very far.  They tend not to believe in them and respect them, and they tend not to focus on high outcomes for them. If they don’t have high expectations for the blind and make the blind excuse for them, they don’t have high expectations for themselves and make the blind excuse for themselves and thus adapt that disabled mentality. They essentially “become” the idea of disabled that they believe in. This translates into incompetent, lethargic services. I tell him to remember “Hue” from that episode of Star Trek: TNG where they take in a young Borg and transform him into a self-determined individual, but then are forced to return him to the collective. Just because you cannot save all from the Borg mentality does not mean you can’t save one. And if you plant an idea in his head, an idea that it is respectable to be blind and that high outcomes are possible, who knows how far that idea can go?

I bring this up in relation to the book I raved about yesterday, “The Politics of Blindness: From Charity to Parity” because I was stupid enough to review it for you without having finished the last four chapters. The first 8 were outstanding, and then it fell apart in the last four. And so to be fair, I felt I needed to make a follow-up post. I base my knowledge of what happens for the blind in Canada based largely on what I observe from Nik and his friends there, and what they tell me, but of course I have no first-hand experience there. McCreathe’s complaints about the CNIB seem to be pretty spot on, based on his own references, Nik and others experiences, and my own experiences with charities like that. I do agree that the CNIB in Canada is detrimental for the blind and needs to fall.

But I disagree with some of the author’s solutions to the problems faced by blind Canadians. He wants to ban all non-profit organizations in their service for the blind, and turn it over to the government. I can see why he would go this direction after a lifetime of dealing with the CNIB, but I kind of want to tell him, be careful what you wish for. The Oregon Commission for the Blind is a government run organization that provides low quality services. The school system that educated Jaime was a government run school system. Alternatively, the Guide Dog charities that he praises (and I see some as having the same exact issues as the CNIB…Guide Dog fundraising almost entirely promotes a helpless blind person whose life is completely changed by a dog.) are , of course, charities. As well as a center that he felt exemplifies good services for the blind, The Louisiana Center for the Blind, is in actuality a charity, not a state run center (although blind Louisianans who go there utilize state funds.) Where I went in Nebraska is state-run, and has good services. Some of his blind programs that he mentioned in his own upbringing in Great Britian I think are state-run. To be honest, most of these organizations get their funding through a number of sources, some charitable and some state-run.

Where I finally, disappointingly had to throw the book across the room, though, was when he mentioned sheltered workshops in the US as being a good idea. Has he NO IDEA how hard blind and other disabled people have tried to shut down sheltered workshops? Does he know that the employees there often do not get minimum wage? That they cannot advance? Sheltered workshops can be run by either the government or charities (Goodwill, essentially, is a huge national sheltered workshop.) In his own Canada, Nik informs me that a sheltered workshop in Toronto was to be closed by (I want to say CNIB but not sure) and its employees wanted to buy it but were not allowed to…BY THE GOVERNMENT of Ontario. Sheltered workshops are a bad, bad, bad idea no matter who runs them. There is almost nothing save institutionalization, that takes agency away from the disabled like a sheltered workshop. They are also seedy businesses who do not promote the advancement of the workers out of them (they are all there under the guise of “vocational training,” you know…) because they need the employees to stay so they can keep getting their low-bid contracts.

The point being in all this that whether a blind service agency is run as a charity or government agency is not so much a factor in its success as whether an agency has blind leadership, blind representation and high expectations for high outcomes. Most of the state services in the United States have a fundraising arm, which can be used in direct service ways or in bullshit administrative ways. If the state agencies in the US were set up to have an over-arching umbrella organization at the federal level (like, say, WIC does) then probably the exact same thing that happened to CNIB would have happened to them in regards to having elitist sighted people who don’t really care about blindness run the show.

Now, his argument is that by the very nature of having a charity provide services for the blind puts us at the disadvantage of being “charity cases” and thus by definition we will not be treated equally. I get where he is going there, but to me, it seems a matter of semantics. I have been called a “welfare case” for the fact that my children have medicaid, a government program. Whereas , people who get scholarships, small business grants, or micro loans are getting charity, but no one considers them “charity cases.”  The blind are associated with the negative connotation of “charity case” because blindness is perceived that way, not because of where our services come from. I will bet that the blind of Oregon, who receive the bulk if not all of their services through the government have been called “charity or welfare cases.” I highly doubt the public (either in the US or Canada) even know whether the State Commissions or CNIB are charities or government programs. Blind people are charity cases because people have a poor conception of the blind. That is historical and cultural, it has nothing to do with funding. The public is smart enough to know that either way, they are paying for your services.

It is a little akin to the semantics of disability, like where people with cognitive disabilities were called the medical term “embecile” until every one used that in a derogatory fashion. Then it was “mentally retarded,” and the same thing happened. Then we got all into “people first language” and that is now getting a backlash. McCreathe even complains about this in the book in regards to blindness, and how the CNIB and others (including guide dog schools) use terms like “living with sight loss” and “visually impaired,” while hanging on to Sight Positive euphemisms like Ski for Light and Lighthouse for the Blind and Vision Help, Vision Hope. He argues that they dance around the word blind like it is a bad, shameful word. It is not the word, again, it is the attitude. I hate to tell those with developmental disabilities, but pretty soon, that will be a bad word, too. (and it will happen to all of us.) This is why the blind talk about “changing what it means to be blind” rather than just switching out the old shitty word with a new shiny one, until that one gets soiled at well. I believe that the community who identifies as having a disabling condition has the right to define it and name it. So if those with developmental disabilities want me to use those terms and not “retarded” then I will do exactly that. The blind just want to be called blind, and so be it. The key is to let no one else define you.

So, you cannot be a charity case if you don’t want to be. And that does not erase the effect of the fact that society thinks of you that way, but that is going to happen no matter what. Instead of worrying about where the funding comes from, I would worry about getting CONTROL of the services themselves. (And then get your funding where you can, if that is starting your own nonprofit, or lobbying for government pensions—do what works.) The issue is de-ghetto-fying the fact that blind people need services. EVERYONE needs services and blind services, no matter where they come from, should not be stigmafied as “charity or welfare.”

I have a utilitarian, capitalist, MBA accountant sister, and it is good that I talk to her about some of this stuff because it gives me a reality check about “how the rest of the world thinks.” Right now, you are going to be hard-pressed to convince the public that the blind do not need EXTRA help. This extra help is given at the kindness of society’s heart. (i.e. charity or welfare. Note: in the US, charity and welfare have pretty similar negative connotations. Charity comes from non-profits.. Welfare comes from the government. The effect of being on either one is about the same in the public’s eye. Welfare might even be a little worse.) I think what needs to be reframed is HOW this “extra help” is looked at.

If you look at blindness through the lens of the social model–a natural part of all the continuum of the human condition–rather than the medical model–a deficit that needs to be eradicated, you can see blindness as just some point on a bell curve of vision. This is a big, HUGE attitudinal adjustment for the non disabled. But then you see that for economic’s sake, the environment is set up for the most prevalent in the population, the sighted. Signage, print, roads, computer monitors, etc. (Computer monitors are accommodations to the sighted that cost money, just like voiceover software is an accommodation for the blind that cost equal money. Yet one is a “special accommodation” and the other is not. McCreathe is misinformed about the cost of providing accommodations to the disabled. He gives a figure of about $25,000, when the ADA statistics have shown that the average is under $500. Most blind people may use some Braille gadgets and voiceover software, which lies in the $500-$1,500 range. In addition, he says that it is not available through the government. Nik disagrees and says that it is, through some type of Human Resources Development Program. I plead ignorance on this one.) The concept of universal design has been shown to not only benefit the disabled, but benefit everyone. Curb cuts help moms with strollers, bikers, and UPS delivery people, not just wheelchair users. Subways that make audible announcements as well as use signage for stops help those who are crowded in and can’t see the sign, who are reading a book, or who are zoning out and almost asleep. However, there is a limit to what we can do to meet everyone’s needs using universal access. I am deaf blind, for example. I may not see nor hear the stops. Should there be Braille display at every seat? Should an escort be provided to me by the transit company? Probably not going to happen. So I have to make work arounds to work within the system I am given. I count stops, take extra time in case I miss mine and have to double back if it is important to be there on time, I may take someone with me. These are all inconveniences to me and are sometimes costly, both financially and in effort. There are a million little things like this that I have to work around in my life, so do blind people and other people with disabilities. A blind pension of some sort could offset these costs. (Another example is that where I can live is so narrow compared to other people and often very costly as housing tends to be more expensive by transit and further inner city. I would REALLY LOVE a housing allowance. (dream, dream. I could totally own my own house right now if I lives out in the exurbs like everyone else.) And I’m not even near as limited as a non driving wheelchair user, where it is almost impossible to find accessible housing in high density transit areas.)

So, society tends to sort of go with this, a blind pension so to speak, otherwise called “disability payments” in the states. The problem is that it is means-tested. Meaning, you gotta be poor and almost virtually unemployed to get it. THIS (Government money, btw) is what perpetuates the idea that blind people can’t work more than anything else. You can’t work, we don’t want to see you begging on the streets…go take a bit of cash and get in your low-income housing and eat with your food stamps so we don’t have to deal with you.)  So what you have is a bunch of wasted talent sitting at home knowing that if they try to work they will lose this extra money, and because unemployment for the blind is so bad (and getting accommodated is still questionable) it is too big of a risk and often unsuccessful. So the public needs to see it like this: You are going to give blind people a small amount of cash each month. They can either sit at home and do nothing and not pay taxes, draw other benefits like food stamps and HUD housing and be basically a burden. OR you could give them a small amount of cash to offset the costs of being blind in a world that is set up for the sighted, and have them be productive, tax-paying citizens. Because guess what? We are really talented, productive, highly skilled employable people!

I think this attitude change cannot come from government or charity organizations. It is going to have to come from the blind, themselves. McCreathe went off on how the government should launch a media campaign about the abilities of the blind. And I thought, um, NO. The Canadian Federation of the Blind should launch a media campaign.* (Feel free to go after those government or foundation grants to pay for it, though!) Don’t let anyone else speak for you. Do it yourself. You cannot have another entity telling people how great you are as you sit passively on the sidelines. And, the government should provide training centers for blind people to be trained so that they can be highly skilled productive members of society. And while I do agree that this should be paid for under the health care umbrella like all other rehab, The BLIND should provide training centers through government or nonprofit channels to train highly skilled blind people. As you can see from your neighbors in the United States, government training centers don’t necessarily provide quality training, it all depends on the people running it. And the number one quality the people running it have to have is a belief in the skills of blind people. If the CFB could provide (say, through health care funds and fundraising and other means) a quality training center in each province like the NFB non-profit ones (LCB, Blind, Inc., and the Colorado Center for the Blind) don’t you think that would be HUGE? I do believe that training only works if it is intense and live-in rather than ad hoc. Just like has been shown in black and women’s colleges, people need a supportive bubble of high expectations separate from the rigors of dealing with the bombardment of negative attitudes during the time when they are forming their blind identity. These places should be run by and for the blind, not be trusted to a government entity that may or may not value the leadership of the blind it its organizational structure. (*And I promise, if I ever make it up there…I WILL HELP YOU. You are still my people.)

OK, one last thing and then I’ll let this go. I think when trying to change attitudes we need to stop pretending like we can do everything exactly as good as the sighted. We CAN do most things exactly as good as the sighted. And way more than they think we can. But I think we also need to be ok with the occasional difference or need. And instead, go at changing attitudes through a diversity, value-added mindset. Here is my parting story.

Many years ago when I worked at the National Center for Self-Determination, we attended this week-long leadership training dealio. There were maybe six or seven of us and we were all disabled people. Me, the deaf blind one, my boss, the wheelchair PhD with CP, my coworker, a PhD with spina bifida, another coworker who was a non speaker with CP, and a couple of folks with developmental disabilities who were national self advocate leaders. And with us in training was a group of middle and upper managers from some big phone company. Each morning, we had to do these little game things which was all about “thinking outside of the box.” like, oh… here is the roman numeral 9:

IX

Turn it into a 6 by only adding one line.

You get the idea. And then we would get a group one to do. Like, oh, just making this up…you have a 4 foot rope, a broom and a stapler, how do you get this stuck cat out of the tree: We would work first on our own and then in groups. Our group of disabled people had an assistant that would read the question and write notes if we wanted her to. We were supposed to raise our hand when we finished. So, the idea was at the end of the week we would be so good at “thinking outside the box” that we would improve our time by the end of the week.

The problem was that both individually and when we worked in groups, our disabled group solved these so lightning fast that no one else even had time to get started. We were nearly instantaneously done when we were supposed to have a few minutes to work on it. At first we called out the answers, but then we were told not to do that and give everyone else a chance. They did improve their time, but we really didn’t, because we were already as fast as it took to read the problem and get an idea out there. Then they made an announcement that our helper was merely reading and recording answers and was in no way shape or form telling us the answers. We had caused a tension. The phone group was pissy with us. So on the last day we had a discussion about it. We explained to them that this is WHAT WE DO. Everyday in our lives we are presented with problem solving puzzles. Every day, multiple times a day the world is not set up for us and we have to use the rope, the broom and the stapler to figure out a different way to do it. Every day we have to look at a problem and accept that the answer is going to be tailor made for everyone else, but we will be left to figure out our own answer.

The phone people calmed down a bit, and it seemed to dawn on them that we had something unique to offer that they just couldn’t replicate. This is the promise of diversity in the workplace. Yes, acquiesce that sometimes it is a pain in the ass when you have to make some accommodations for us (though, really, usually it is not a big deal–get over it.) But in return we have things that are unique and valuable to offer that you might have trouble getting in the usual pool of workers. Don’t be threatened by it, embrace it and see that we are just like anyone, with strengths and weaknesses that add to the mosaic of everyone else’s.

Our gifts will only make it out side of our self-advocate enclaves with self-determination and leadership. That is what will change what it means to be blind. Not charities or government. Only Us.