“OMG, Parents of disabled kids are THE WORST!”* Reaching Parents of Kids with Disabilities

*Common quote not from me, but heard from many disabled adults.

**To protect confidentiality, names and circumstances have been changed and some persons may be composite characters based on real encounters I have had.

***I know that there are all kinds of parents who have all kinds of characteristics and complex reasons behind what they do that goes beyond disability. There are some generalizations in this article based on trends I see, but that is what they are: generalizations.

This is one of those posts where I don’t really know where it should go or what its conclusion will be, if any. I know what I want.

I want to reach and support parents with disabled kids, in which a) I don’t have to sell my soul to do it; b) I tell them the truth in a way that comforts and assists them on their journey; c) it is not painful for me and d) I am not so easy on them that they take their child’s lifetime to “get it” causing the kind of complex relationships most adults with disabilities have with their parents.

Well, I really want to support the disabled kids. To be honest, I care less about the parents, but  I DO CARE about the parents, I don’t want them to feel bad. I am a parent, too. But my singular goal is to support the disabled kid. Parents are so key to a disabled kid’s future, of course, that supporting the parent means supporting the kid, especially at very young ages.

Throughout my career and in everyday life, I have had many occasions to interact with parents of disabled kids; most especially blind kids. Although these experiences have been varied, I have noticed a few things.

  1. If you talk to parents about their disabled child, many times they  have a more positive view of the relationship than the child has about his relationship with his parent. Its complex, but children (including adult children) often speak of feelings of alienation and lack of respect, whereas parents seem unaware of this.
  2. Many parents of disabled children seem to avoid interactions with adults who share their child’s disability. They much rather get information and resources from non disabled medical or educational professionals. This is true EVEN IF a disabled adult has the exact same professional credentials as a non disabled professional.
  3. Many parents of disabled children avoid and eschew self advocacy groups and/or groups dealing with disability social justice issues. They remain stuck in a pathologic and medicalized approach to their child’s disability. If they do recognize that their children might be treated differently due to disability, they see it as inherent to the disability itself rather than being socially constructed.
  4. Many parents do not think of their child as a minority or marginalized citizen in society. They do not feel the need to recognize this and seek role models or peers from the disability community (or if they do, it is only so their child will see that others are just as different as they are, rather than reaching out to the community that their child will likely someday become a part of), instead, they seem to try to keep their child as close to the able bodied worldview/mindset as possible. This means that disabled children not only have to negotiate the majority culture in their schools and communities and larger world/media, but they have to negotiate being the only minority in their own home with family members that do not recognize the challenges therein.
  5. Many parents tend to swing to the extreme ends of a continuum of disability identity. Either they want their kids to be as non disabled as possible in appearance, methods, etc. and never rock the boat or make waves; or they get so wrapped up in their identity as a special needs kid’s parent that everything they do revolves around disability. In the first scenario, the child often feels like he can never measure up to the non disabled ideal and feels like they must “pass” to earn love. In the second scenario, the child feels the heavy burden of living under the parent’s acquired lifestyle of special needs parent and stays dependent and needy to earn love. In reality, most disabled adults become pragmatic about their disability and integrate it into the many aspects of who they are and work accommodations into their lives in a resourceful way. Parents sometimes seem confused by this outlook of adults with disabilities.

In virtually no other circumstance does a child have to grow up in a different culture than their own. (I recognize the intersectionality of cultures, here. One can be comfortably Italian or Black or Agra or Urban yet still not feel understood within the family as a disabled person.) The closest parallel of the challenges might be found in transracial adoption, but as this is voluntary (no one makes you adopt a child of a different race) one would hope that in those circumstances, the parents are at least somewhat prepared and accepting of the transracial aspect. Disability comes for most parents out of nowhere and without their consent to participate in that world. Having a child who is LGBTQ might also come close, and I don’t mean to minimize the challenges of these families, but LGBTQ able bodied folks can also learn and become independent in the same way as their peers and thus do not have the complications of needing to find alternative accommodations within a family that does not completely understand or accept them.

A few years ago I was sitting around with several blind people and we started talking about funny parent stories. And someone asked if we, or anyone we knew who was disabled, had parents who weren’t completely screwed up about disability and who had a decent relationship with them in regards to disability. No one could think of any. Although some people thought that their parents had improved drastically over time, all agreed that this progress was hard coming and that their parents were never going to be completely “cool” with disability. Many of us had able bodied friends that were much more comfortable and respectful of our disabilities and the role they played in our lives.

I honestly don’t know why this is. Maybe because, again, our non disabled friends self selected to befriend  and learn about us and family members don’t have a choice? Most of us felt that our parents loved us and tried their best, but couldn’t completely make that leap to full acceptance. I have looked for studies of this dynamic and haven’t really found much out there. It honestly confuses me.

When I look at my own family, something funny happens. If I can look at the whole situation from the outside, like I am omniscient and I can see my 22 year-old, high school educated mom getting this kid who can’t see dumped on her, and how she dealt with that throughout the years of my growing up, I see what she did. I see how she tried her best to do the right thing. I see how she probably did not get a whole lot of support from professionals and got a lot of mixed messages. I see how she felt that she was doing everything she could for me by dragging me around to doctors all over the country. I see how she probably struggled with having high standards for me but also making allowances for my disabilities. I see how other, more generic family things also contributed (birth order, career and scheduling issues, etc.) I see intellectually how she worked hard to do the best she can in the most loving way possible. Almost everything she did makes a lot of sense given the time and place and information available at the time.

But if I jump back in my body, and I become again the girl that grew up in that household, there is a lot of pain there in places. I remember being about 8 and hearing my mom tell our kitchen remodeling contractor that the counter tops needed to be curved so I would not get as injured if I bumped into them. I had never bumped into the counters before, why does she thing I’m so dumb? I thought back then. I remember battles upon battles about me wearing my contact lenses even though they were like torture in my eyes to the extent that I could never see out of them as well as I could see out of my very coke-bottle looking regular glasses. She yelled at me for not cleaning the contacts well enough so I would spend hours in the morning trying to clean them right, putting them in my eyes, and having them burn so bad that I would take them out and clean them again and then be late for school and be in trouble for that. She would take my glasses away from me and I would either skip school or go to school without anything which made doing any kind of work at school impossible and getting around without bumping into people and getting made fun of. She told me I could not babysit while wearing my glasses because my glasses scared people. That line, that me with my glasses scared people, burned in a very deep way. I remember telling my teachers and her over and over again that I didn’t understand math because I could not see the board and I could not follow when the teacher explained it to me on a piece of paper and she said I was lying and not trying hard enough. I always felt like Dawn Weiner from “Welcome to the Dollhouse.” Neither accepted at school or at home.  I remember when going to doctor after doctor and how they would talk about me outside of my presence in hushed tones, I felt like if we were putting this much work into finding doctors that there must be something horribly wrong with me that no one could stand. Why else would my mom consent to them torturing me like this? I remember wanting to go to a certain large, out of state college and my mom telling me that I would never make it there, so instead I went to a small liberal arts college that I told her I hated. I remember her really discouraging me to look at any other careers that might be more challenging than elementary or special education. I remember her rejecting outright all my blind friends. Those things were painful.

Most disabled kids have these stories. And the difference between the ones that seem to patch things up later on and those that don’t is that the first group had parents that recognized their wrongs, learned and grew to respect their disabled child as an equal who by necessity must live in a bit of a different world, and changed. Those who still have troubled relationships with their parents still struggle because the parents still seem to be at a loss as to how to deal with their disabled child. I only went to the small liberal arts college for one year. Then I successfully attended a large state school. Then I successfully got an advanced degree from the VERY SCHOOL I was told I would fail in just six years prior. One admission of “Hey, I was wrong about that, I shouldn’t have held you back and now I see how of course you could have handled whatever school you wanted,” would have erased all hard feelings, but that never came. I have to give my mom a break here because she died young. Maybe if there was more time… But my dad still makes little micro aggressive statements. You accept it and go on. My sister asked me recently why I don’t just tell him that his statements bother me. And I’m like, I’ve been telling him that for at least 30 years. I don’t worry about it anymore. I don’t know why, of all people, it is the parents who hold the tightest to disability stereotypes when others seem to more easily leave them behind. Again, there should be a study.

Other people I know have the same issues. Nik has stories of his mother just crying and crying while she took him to doctors and even faith healer types to find a cure and how awful that made him feel, like he had ruined his mom’s life. Nearly every disabled kid is grateful when the cure train finally stops, or they grow old enough to choose to hop off that medical circus.  And sometimes, you just have to laugh at your family’s seeming inability to ever think you can live competently. We recently had relatives of my husband, Nik, here. And I noticed that if you ever even just casually brought up something disability related, they could not talk about it. They just shut down. But then they would say stuff like “How can you find your way back?” when Nik was going down to the park only a block away from our house to collect our kids. You can’t even answer that except to laugh. Its why many disabled people only take their parents in small doses.

But it can get more sinister and much more abusive than these small alienations and annoyances. Nik and I are lucky, our parents did support our independence over all and let us go, which is probably the best gift they gave us. We have seen extremely overprotected kids who turn into dependent adults. One example is an old friend of mine. She was a nice, competent girl whose father protected her so much that she found herself in grad school unable to order pizza without her dad’s say so. Although she has a PhD and wanted to go into international work, she ended up working as an administration clerk for a nonprofit. I always wonder if she weren’t always conditioned to feel like she needed her parents protection from everything if she would have ventured out further in her career.

Nik and I have gotten some referrals from domestic violence shelters. Women who are disabled and always felt like they needed to be cared for sometimes attract men who take advantage of this vulnerability. If they are able to escape  to a shelter, they face the added challenge of not having the skills to live independently. We can teach them independent living skills, no problem. A much bigger problem is to break through the mindset they grew up on that they are not competent and need a man to help them. I recently spent time with the cutest little blind girl who really has good skills for her age. She was going to use her white cane to go down a flight of stairs. Her father made a big production of turning around, facing her and walking in front of her down the stairs as he instructed her on each step. The girls said, “I can do it myself, daddy!” and he said, “I’m just here to make sure you don’t fall. Daddy is here to protect you.” I think of my shelter client and I think, this is how it starts. The father completely disregards his daughters words of confidence in traversing the stairs and undermines her with his insistence on her need of his protection.

What does one say to him? It is such a thin line between alienating these parents so they never listen to you and actually winning them over to the idea of trusting his daughter. I believe that this man loves her and is trying to be a good father. I also believe that he, and many parents, get a little too caught up in the martyr role of “Parent of Disabled Child.” I may cringe when I see him helping his daughter down the stairs, but the majority of the reaction he gets from the public and probably his circle is that he is a noble saint. A brave knight in shining armor that is doing everything he can to keep his pitiful daughter out of harms way. That image is hard for some to eschew and is very easy to get caught up in. The disability becomes more about him than her.

It wasn’t until recently that I started seeing this parent issue as a trend, rather than just my and some of my friend’s personal family issues. In large part, this is because of the current all out verbal war that is going on between the parent support group “Autism Speaks” (AS) and the self-advocacy group “Autism Self-Advocate Network” (ASAN) AS is a group founded and run largely by parents of autistic children. They have a history of denying representation of actual autistic people in leadership and avoiding altogether the opinions and preferences of the autism community. They also are advocates of controversial therapies such as Applied Behavior Analysis to correct self-stimming behaviors made to normalize, at lease outwardly, the behavior of their autistic children. ASAN also claims that the AS support groups and PR materials give a very negative, tragic impression of life as a parent of autistic people that promotes violence and martyrdom of parents. A good example of how AS works is to watch the series, “Parenthood” where the starring family joins an AS support group. There is a lot of crying and pitying and martyrdom involved. I had to stop watching after the first season because I heard it got no better.  ASAN feels that AS’s portrayal and promotion of autism as a tragedy and its parents as martyrs leads to abuse, indignity and lack of self determination and voice for autistic people. They even feel that this attitude promotes the acceptance of homicide by carers and parents of disabled people and that children are in fact being killed and their killers exonerated because of the work of AS. AS is the largest organization that receives the most press in regards to autism, and actual autistic people have been calling for a boycott of their programs. Many other disability self-advocacy groups are also calling for boycotts of parent groups that don’t have disabled representations and present a tragic and medicalized version of their lives.

While I can recognize that having a child with a disability can present unique challenges to parents and that parents will go through a perfectly normal grieving process when they discover that their child is disabled, I find it hard to work with groups and professionals that want to prolong and pathologies this grief and challenge as a tragedy to be taken out on the child. I am not a grief counselor, and when I am asked to speak to parents of children with disabilities, I do not feel comfortable if the group starts to fall into a well of self-pity and tragic outlook. I try to avoid this at all costs, but it can be a difficult balance. They seem to expect this kind of support group whenever they got together, and when I try to carefully frame my work as a “resource and problem-solving workshop, We give each other positive, practical and useful support and we are not a grief support group” I tend to get looks of confusion. I also don’t understand why they would want to sit around and talk about how scared they are about something when that something is not even a real fear. For example, people will often cry about how they worry that their kids will never be able to get married and have kids. But when I say that this fear can be easily debunked because besides myself, I can name 50 odd blind parents off the top of my head and give you all kinds of information on how its done, they sometimes don’t want to hear that, they want to just cry about it with others who cry about it. Wouldn’t the actual accurate information about how blind people do things and what is possible help to alleviate their fears? I feel like they don’t quite believe that we really SHOULD be having children and we are somehow incompetent at it. I am fine with the not knowing everything about blindness, but wouldn’t you want to find out? That’s why I am here to help you see the answers and possibilities. Grief and fear is a legitimate part of dealing with your kid’s disability, I understand, but it does not have to be a permanent state of being. Go through the stages, I will try to meet you there, but go through them. Work it out on your own time, not your kids. I will try to find educated counselors and groups to help you, but DO work it out.

Parents don’t seem to see the treasure trove of a resource they have when an adult who shares their child’s disability is offering to provide himself as a resource and troubleshooting sounding board. They see you more as a novelty or even as something to avoid. My husband is brilliant and skilled and funny and kind, and is a hell of a blind role model. But he is also facially disfigured by blindness. You can feel the tension of their initial revulsion when they see him. Now, this happens in the general population, too, sometimes. But usually you can get them over it in a few minutes after they talk to him for a bit. With the parents, they seem to miss everything he has done, is doing and is telling them is possible for their own children. He is a bilingual two time immigrant who has gone to college, worked in major corporations, started a sailing nonprofit, started two companies, raised children, travelled extensively and just is a nice guy. But all they seem to be able to see is that he doesn’t look normal, and he is blind, Blind, BLIND and is never going to see, nor does he seem to care. They struggle to relate.

We try to reach out to parents and we have to take a bit of abuse in the form of micro aggressions to do it. Its OK and I’m not blaming them because that is where they are and we signed on for this. This is our job. But I do have to admit that when doing it for several days, it can get kind of trying on the nerves, the cultural gap between us and the world their child will inhabit and them and their able-bodied world of some entitlemnt is hard to cross. We see it, try to understand it and try to cross it to the best of our ability, they don’t even want to see it or see us, who remind them of it. Sometimes this is just confounding as to how to reach out to them in a way that they can reach back, and other times it is downright traumatic.

A couple of years ago, we were asked to put on a workshop and do a “simulation” activity for a group of parents of blind children. We had worked with the organization before, and they always had nice things to say about us and our work. I was a little leery about doing a blindness simulation, because I have always seen that when someone slaps on blindfolds without the skills to go along with them, they just feel helpless. BUT! I was told, these are parents of blind kids. They are not newbies. They have had to deal with and process blindness for years already and be educated about the possibilities. They may not have great skills, but they have surely done simulations before with their children’s Orientation and Mobility instructors or even on their own. What we were suggested to showcase was the burgeoning GPS technology available on smart phones that can be used as a mobility tool.

We had this great idea of having a little scavenger hunt in this cute downtown area of a very small town nearby. We made Braille cards for teams to find a brochure at the library, a map at city hall, a menu from a coffee house, etc. We enlisted a blind friend of ours who we knew to have excellent travel skills to help us so that we could put parents in very small groups. (three to an experienced blind traveler). We would always be with our group and help them along, and no one would be walking more than three blocks or crossing more than two streets. We would demonstrate how GPS could be used to help. We liked this area, too, because it was flanked by two relatively busy streets, each going a different direction. We would never be crossing these streets, only small side streets. These streets would be an excellent orientation sound that could constantly be referred to to keep our parents on the straightaway.

Now, a little background on our three blind team leaders. Nik lost his sight suddenly when he was eleven and so never had time to adjust his brain to blindness, He spent the first day after he came home from the hospital wandering around his farm and getting oriented to his surroundings on his own. Our friend, Jon, came from an orientation center similar to the one I attended where he worked on street crossings his very first day. On my first day ever with blindfold training (when at the time, I had a good deal of travel vision) , I crossed four way traffic lighted streets in the morning, and then had to go on a field trip to a Upick farm in the afternoon and navigate around rows of strawberries. Was I nervous and unskilled? Yes. It was tedious as hell and hard work. It took a lot of concentration. Did any of us break down into a heap of devastation? No. We did it because we had to and we had no choice. We were encouraged by our teachers and we just got it done.

So, this was the frame of reference we all three came from. Well, Jon had a small clue of what was to come. He had worked some public “Walk with the Blind” events where members of the public donned blindfold and learned simple can techniques. He told us our scavenger hunt was way too ambitious and that we should dial it back. So, we did. We gave each group only one destination that was only two street crossings and one block away. Still, he was not prepared for what was to come.

My group actually did fairly well. I had a mom, a dad from a different family, and my son, Naim who was 8 years old. Naim had done just a bit of blindfold stuff in the past when he visited Nik at work before and he did well and was not too afraid of it. So, Naim and the mom who indicated that she had done a bit of “simulation” with the old vaseline on the glasses bit, did very well. My dad was a little more hesitant, I remember him saying that he felt like he was going to be punched in the face. He kept bending down and touching every little thing his cane came into contact with. It was fine and he did ok, but I was working with him very slowly while Naim and my other parent were going ahead. I knew they felt it was tedious, but for a first time, they did very well. We made it to our destination and made it back.

When we got back, though, we found that some of the other parents had just had complete meltdowns and had to stop the exercise. I wasn’t there, so I cannot describe the meltdowns or what happened. I think Jon can be kind of tough, but I know that Nik is extremely patient. So, as we were driving back to our original destination, this little revolt from the parents started happening. They were seriously freaked out and PISSED OFF at us. And the ones, like my people who really hadn’t broken down and did ok, all of the sudden jumped on the bandwagon and got mad at us, too. We ended up having this sort of post mortem meeting with them to try to calm nerves and see what could be done to make them feel better. But they really ganged up on us. They felt like we were purposefully trying to make them feel vulnerable and to scare them and show them how awful it would be for their children. One of the moms said, “I was just starting to relax and feel better about my child being blind and now I am terrified!” It stabbed me in the heart to hear that. It was exactly the opposite of what we were trying to do.

Jon, Nik and I talked afterwards about it and we discovered how traumatized WE WERE about the whole thing as well. What got to us was how frightened, unprepared and unaware they were of how it is to be blind. They were so totally fearful of who we were and how we worked that we wondered how they could ever believe in the abilities of their own children. We expected some nerves, we did not expect complete and udder emotional breakdown, nor the anger that followed. They are so afraid of us, of how we live and who we are, we thought in awe. We wanted them to see that this traveling while blind can be done. There are skills and tools to help you. Instead of learning something from our skills, they were angered that we drug them down into our challenged world of gloom and terror. It was as if all this time we were trying to gently lead them over to us by shaking little crumbs for them to follow, but then we yanked them right into it and they so violently didn’t want to be there they revolted. I met one of them two years later and she is still mad. (The organization who hired us thought it was something the parents needed to do, so they were not mad at us and told us we handled the post mortem well.) But still, we had to admit that what we tried was a disaster.

We have to meet them where they are and that was too big of a jump, for sure. We offered to take them on a do-over just around a very quiet and safe park trail area. And to their credit, one of the families took us up on that and did very well. No other families wanted to. I always wonder how much we set them back by that activity. But I also wondered about the reaction to the original activity, when many, many, many people we know (both partially signted and sighted public at large members) did not act so violently emotionally.

I try to think of it as a parent. I guess a slightly nerve racking experience for most people might intensify greatly if you never really thought before that this is your kid’s life? Jon, in particular was incensed that they had never seemed to really process the realities of blindness nor were they able to trust in the abilities of their adult and trained blind guides. I think we all had that feeling of how, no matter what we did, what degrees we got, jobs we got or competencies we acquired or goals we accomplished, many parents do not believe in blind people. And we saw those kids were going to have to face that attitude growing up, and it was exactly the one we had to face. We wanted to nip it at the bud and send their parents on another trajectory, but instead in that activity at least, we saw that we could not fend off for these kids the same conflicts with our parents that we had growing up.

I get the, what if YOUR kid was blind, had a spinal cord injury, other disability, etc. I guess I can’t say exactly what i would do, but I guess I am too comfortable and used to the disability world to think of it as life-ending devastation. Would I be stressed and upset? Of course! Would I have to grieve with my child? Most certainly. But I guess I would let my child take the lead and pull in the resources and role models I could. I would go straight to a self advocacy organization and pick the brains of as many people with that actual disability as possible and invite as many of them as reasonable to get to know my child and be involved in his life. I would know that own grief is my problem and my responsibility to resolve and not spill it all over my child. I would not avoid the very best people who could help us.  I would learn to understand the world they live in and bridge it to my own. I’m sure I would make stupid mistakes, too. But I’d like to think I would learn from my child and apologize and correct my screw-ups.

I want to do better to reach parents. I don’t want to alienate them and I want them to be comfortable reaching out to me and other members of the disabled community. I want to figure out how to navigate the cultural gaps. Sometimes I think I do well. I once had a whole twenty minute conversation with someone who was concerned that their blind child would not be able to wipe themselves correctly in the bathroom. We talked in intimate detail about toilet paper and what you can sense when going to the bathroom and the aftermath. Inside, I was laughing my head off, but just at the subject matter, not at the parent. It always surprises you what a parent will worry about. It seems like they worry about things you never even thought were a problem and don’t worry about what you think are the real problems. But she thanked me because she didn’t know who to ask, and hopefully I created a little bridge there.

But then recently I met another parent who was discouraged about being unable to find a specialist for her child’s eye disease, which is progressive and incurable. And although I have  sympathy for the way her insurance company and the medical establishment was kind of dicking her around, I could not figure out how to say, “Just relax. It doesn’t matter if you go to that doctor tomorrow or wait five years. There is no cure, there is nothing they can do anyway” I wanted to tell her that she has done all she can on the medical side, and unless he is is pain or something, she just needed to let that side of things go. It is not urgent. But also, to let her know that even though the likelihood that her child will lose his vision is very high, IT WILL BE OK! I want to shout it from the rooftops! Just let him be! Screw the retinal scans and the ERG and the dilations and whatever. YOUR CHILD WILL BE JUST FINE! Spend your energy on getting him good blindness skills, Let him just grow up and blossom and be a kid. Follow his interests. Allow him to meet other people with his disease so he is not afraid. Teaching him under blindfold at least some of the time so he knows how to do things without vision and won’t be so scared of the coming progression. Let him be OK!

But I feel like I was not allowed to say that in this group, because the parents would pounce on me for minimizing his issues and rejecting medicine and not understanding their torment even though I HAVE the SAME EYE DISEASE AS THIS KID! I don’t count as much as the eye specialists and the teachers of the visually impaired. I am other to them. The fear is that their kids will be other like me.

I wonder how things would change if people with disabilities would have more opportunities to be the special ed teachers and specialists and doctors. Would they then get respect from the parents and would it change their outlook for their child? We have a ways to go before disabled folks take their rightful positions in these roles. In the meantime, we try our best to reach out to the kids and give them a lifeline to positive and factual information not prejudiced by ablism. We need to better reach the parents where they are, perhaps, but we are reaching for them, and they need to reach back. Disabled adults, especially those that work in the disability profession and have been on both sides of those services, are an invaluable tool that cannot be cast aside.

Intersections: Me, Disability, and Caitlyn Jenner

Betty Janet Skinner, a disabled transgender woman, was murdered in her assistive living residence in 2013

Betty Janet Skinner, a disabled transgender woman, was murdered in her assistive living residence in 2013

So, I’m fortunate to have a bagful of white, straight cisgender privilege, but one of the best things about being in the disability community is how that marginalized experience can give you insight into other marginalized populations. You don’t know how it feels to be them, exactly. You don’t know the ins and outs of their specific issues and live them at the level they do. But you do know how it feels to have a cultural narrative about people who are like you be so untrue and damaging as to permeate almost every aspect of your life.

There are things I don’t know and understand about transgender issues. And if and when they appear in this post, I want to apologize up front and, if you have the patience and inclination, I invite you to school me where I show my utter Don’t Have a Clue-ness. Also, I want to iterate that no matter what my understanding (or lack thereof) is of transgendered folks I fully believe that they should be treated with respect to their chosen identity and with the names and pronouns of their choosing. I generally want people to be happy, so I am very happy for them if transitioning genders makes them happy. I feel no hate, discomfort, nor disdain when I interact with or see a transgendered person in the media.

Ok, but here it goes. Something bothers me about the progressive cultural narrative of transgenderedness. It intersects weirdly with, I guess, the disability mindset. It’s the “I’m just not comfortable in my body” or “I was born in the wrong body” thing. You know where this is going…

I once talked with disability advocate Norman Kunc, who has CP. He was telling a group of us that when his caregivers chat with him, it is really bothersome for him if they start a lot complaining about how they think they are too fat, their hair is too thin, or they don’t like something about their body. He said, if they are so critical and judgmental of their own bodies, what must they think of mine? He would let them go if he started to feel too uncomfortable with it. Why deal with the idea that the person who is helping you with intimate things loathes your body just as much or more than her own?

My eyes are screwed up and they look it, I suppose there may be some plastic surgery that might be able to fix how they set in my bone structure and set them more evenly. But the actual eyeball scar tissue, there is nothing to be done. It doesn’t bother me. I don’t care. Was I born with the wrong eyeballs? I do’t feel like that. Then, we get into the “cure” problem and disability. Disabled people tend to reject the overall “everyone should want a cure” mantra that lionizes those who never quit searching for a cure because they don’t want to imagine a world without people like them in it. They (and I) are so attached as disabilities being integral to their sense of self, that they cannot imagine changing that. I mean, I suppose I could get an eye transplant if that was possible and I would get over it if I were forced to. But what if you have something like autism and everyone wants to separate you from the disease? Where does the disease stop and you start? They are one and the same.

Yet, if I say…”I wish there was a cure and I would not be deaf blind tomorrow!” No one would bat an eye. that is totally acceptable. It is even applauded and encouraged as the strong, courageous narrative for a disabled person to have.  But if someone says, “I really am not happy with my working eyes. I want to have surgery so that my eyes are blind and disfigured.” That person would be at the very least be referred to a mental health assessment and would be very hard pressed to find any doctor who would agree to his chosen modifications. This is the dichotomy that disabled people fight. And, in some ways, I think it is similar to the backlash against transgendered people.It all has to do with social views of what is normal and what isn’t.

I am seeing two different narratives about Caitlyn Jenner: The first is acceptance and inspiration. She’s beautiful! She is brave! And I tend to agree with these. Anyone who fights the establishment to express their own identity is brave. It is not unlike those disabled people who eshew uncomfortable and sometimes quasi- functional cures, treatments and cosmetic prosthetics that able-bodied people rave about. They demand that they are comfortable in their own skin even when the world is not. Its a different side of the same coin. Caitlyn rejected the body that the world was comfortable with, but she was not. And of course she is beautiful, but you can’t deny, so was Bruce. As Jon Stewart said, “It’s really heartening to see that everyone is willing to not only accept Caitlyn Jenner as a woman, but to waste no time in treating her like a woman.” The unpacking of this beauty issue and all it implies is too big for this post, but the beauty I would like to think they are talking about is the obvious comfort, freedom and happiness she now expresses.

Caitlyn Jenner, from Vanity Fair

Caitlyn Jenner, from Vanity Fair

The other narrative, of course, is the transphobic “HE is sick! He needs help! He is an IT!” line. The bravery of trans folks along with folks that take pride in their own disabling and deforming conditions is to be true to themselves when they know others will treat them with violence, fear and hatred. It is a heavy price to pay. But as many who subscribe to the social model of disability would say, disability is a societal identification, not a physiological one. (i.e. why are 7 footers millionaire basketball stars while 4 footers are thrown within the realm of circus side shows and disability? Disability is largely a social construct. And the social marginalization that goes along with it is entirely constructed.)

I don’t want to say that transgendered folks are just sick people who don’t accept their bodies and their natural states. I don’t think that this is true. But I do understand how it rubs to hear rejoicing in the posit that transgendered people were born in the wrong body and they just needed to have (X,Y,Z) medical interventions to fix it. It gets really close to those who expose cures and treatments to make disabled people look less disabled. I was not born in the wrong body. I do not want to be “fixed.”

So, I propose that transgendered issues are also social issues, based largely on society’s steadfast need to define gender in a strict binary. Nothing is wrong with the person who is trangendered, except maybe their identities are on the more extreme ends of gender difference, and so it is much, much harder for them to comply with gender norms than most people. But the problem is gender norms themselves, not transgendered people. Males have penises, XY chromosomes, testosterone, and must be attracted to women. They must wear pants, dark colors, and like tools and cars and be awkward around babies and kittens. Females have vaginas and breasts, XX chromosomes, estrogen and like men. They should like pastels, wear dresses at least on formal occasions, be nurturing and like flowers and Oprah. But in truth, all those things are not absolute and slide upon a continuum. Of course, even for those of us who are still considered within the acceptable gender normative range, not one of us fits perfectly into these binary definitions of what it is to be “man” or “woman.” Society has a little wiggle room, but not much. My question is, if gender definitions were broken wide open and the binary ceased to exist, would there still be transgendered people?

I honestly don’t know the answer to this. And again, it is a weird irony compared to what the disabled face. If the disabled are all cured, they would be accepted by society, but many feel that there would be a loss of that experience and culture both on an individual level and on a societal one. Disabled people add value to society. But if the societal definition of disability vanished and people were just people who could do these things and not do these other things, that value would still be there.

So if there were no binary men and women, but some born with a penis could wear dresses and have long hair without any reproach, their value would still be there, but I suspect that would not be enough for many transgendered people. I get, on some level, that transgendered issues are not just about dressing as a person of the opposite sex and calling yourself a different name and using different pronouns.

I don’t know enough about the physiological aspects of it. Does a person who identifies as female but was born male NEED breasts? Or does a person who was born female but identify as male NEED a beard to grow? Do ciswomen NEED breast augmentation or laser hair removal or a facelift? Do men NEED Rogaine or muscle building powder? I do not know if I am comparing apples and oranges here. I hear some transgendered people saying that when they started taking hormonal drugs, they felt so much better. So there is much we don’t know about why some would go through so much difficult physical, emotional and sociological transformation in order to feel whole.

But when I look at myself and my own disabilities, I ask myself what I would be willing to change and what I would not be willing to change. I don’t ever think about getting good vision or hearing. I play around with the idea of Cochlear Implants, but there is no real rush. Maybe someday. But I also have kidney disease. And for whatever reason, kidney disease is not an identity to me like deafblindnerss is. Which is weird, because there is a “club” atmosphere for those who deal with the nomenclature of dialysis, kidney diets, and transplant medications. I’m sure to some it is an identity, but it might be more like the identity of cancer survivors sometimes take with them. It is the identity of staying alive and understanding your mortality. If someone offered me a cure for my kidney disease tomorrow, I would take it. Because, although I can recognize some that positive experiences have come out of my disease,  kidney disease seems more like an obstacle to me being myself. Deaf blindness seems like an integral part of me. Even if I did go for cochlear implants, it would still be a part of me. Cochlear implants would be something I would do to make it easier to get around in society, not something to make myself more whole or perfect.

I think it all comes down to the primary right of bodily autonomy. I don’t want society to demand I get cochlear implants just because it might make it easier for them if I do so. If I am going to make that concession, it will be mine to make. I don’t even want to be required to cure my kidney disease if that were possible. And with a gendered society or not, I do not want to tell someone else that they do or don’t need breasts or a penis or a beard or a dress. So, if the Caitlyn Jenners and Chaz Bonos of the world say that they feel better and free and more themselves by making these sometimes extreme body modifications, then so be it.

When I was very young, a person with a cognitive disability told me she wasn’t retarded, she was just slow. And I said (like kind of a dick), “but retarded MEANS slow. What difference does it make?” of course, in my naiveté, i did not realize the years of abuse, violence and baggage she had dealt with around the word retarded. “Retarded” which is not an evil word in and of itself, was made evil by the culture which also made it bad form to call someone an imbecile or a moron. The next word will get bogged down with abusive connotations as well, unfortunately. But it doesn’t matter. Even if society someday quite abusing this population, they get the right to name themselves. So do transgendered people, and so does everyone. They also get to decide what medical interventions to do with their bodies and what aesthetics they use, too.

What transgendered people are going to do, along with their LGBTQ and disabled brothers and sisters, is nothing less than change everything. They are going to blur the gender binary so far until it doesn’t exist.They are going to make it easier for anyone to express themselves and become their true best selves. Caitlyn Jenner’s life is not a typical experience perhaps. She is much more protected and privileged in her experience than, say, my aquintance Emily, who is still fighting insurance companies and trying to raise money for gender reassignment surgery. However, Caitlyn, Chaz, Emily, and all the people who take this brave step and support them are going to make us all better people. I can only think that some of that will rub off in a positive way over to disability social justice issues.

Yes, I can see you waving your hand in front of my face. Stop it.

My new (as of October) guide dog with my ID card which carries no legal status and is not allowed to be asked for by businesses or public accommodations.

My new (as of October) guide dog with my ID card which carries no legal status and is not allowed to be asked for by businesses or public accommodations.

As a vision and hearing impaired special ed kid, I was required to be turned over to adult rehabilitation in high school for “transition” services. When I was 16 years-old, my special education transition counselor brought a white cane to my house to give me my first orientation and mobility lesson. I was horrified. “I am not blind,” I said. I made her drive me to a different neighborhood to use the cane, so my high school peers would not see me and think that I was.

After high school, as part of my transition plan, I attended a 40 hour a week, months long program at a blindness adjustment and training center where I wore blindfold to learn the skills of blindness. I learned that only 10% of blind people see absolutely nothing, and the most blind people with canes were like me, they had some or a lot of usable vision. The question there was, are you safe while walking in your community and life 100% of the time without a cane and using alternative training techniques? If not, then use the cane. Use it with pride and don’t worry about what other people think. The vast majority of people in my class were partially sighted like me. We wore the blindfold throughout training so that we would know in our minds that no matter what we did, where we were, or how much sight we did or did not have, we could travel safely because we had those skills. At the end (last week or so) of training, we were allowed to transition to traveling with the cane without the blindfold so that we could get used to making decisions about when to use our sight and when to use the cane and alternatives to sight. It was actually harder for us to travel without the blindfolds at first. But after a bit, we got used to incorporating information we got from vision, vs. information we got from the cane and our own skills.

Orientation and Mobility for the Blind is 90% head game, 10% technique. You are told by everyone your whole life that you can’t go anywhere safely if you can’t see. And then you learn that its just not true. I’m glad I had to wear blindfolds because I never would have learned this otherwise. I always might have thought that I was using my vision. A blind person uses the cane itself as a means of tactile information gathering. It is mostly for the micro work of getting around the obstacles that are right in front of you. The macro work of traveling without sight is teaching yourself how to be a detective and learning how to hold a lot of information in your brain. You take the cues you know about your area and combine them with directions you have researched beforehand and cues that are going on in the immediate environment. Of course traveling with sight is more convenient and efficient, however, traveling without sight and using other methods and senses works just as well in the end. After my training, I was confident that I could travel anywhere I wanted to go and was no longer self conscious about using a white cane.

I remember the first day of really living on my own in college and having to run around town to run a bunch of errands. I did it all by myself! It was probably the moment that most likely mimics another milestone that I missed, getting my drivers license. I heard my friends talk about the freedom they had when they could finally drive themselves around. I felt that same way when I finally had enough travel skills to take the bus and walk anywhere I wanted to go. No more waiting for my mom to drive me everywhere or begging for rides. It was fantastic.

But there was a bewildering side-effect to my new-found freedom. I had to deal with how people treated me as they perceived me as blind with a white cane. People stared and jumped out of the way as I walked down the street. They talked in over-enunciated sentences as if I couldn’t understand them or talked to my companion about me as if I weren’t there. That was weird enough, but it was not the worst of it. I have usable vision. I sometimes use it. People sometimes notice that I use it. And it seems that someone with usable vision using a cane makes them very, very mad. People told me I was a fraud, a faker, and that I was just trying to take advantage and get attention. Or if they didn’t say anything, I got a feeling that they didn’t completely find me trustworthy and were wary of me. I felt like I landed somewhere in their uncanny valley of what I should be.

My vision and hearing loss, along with kidney disease, are caused by a relatively rare genetic disorder called Alport’s Syndrome. My hearing history is somewhat uneventful. I started Kindergarten with a mild hearing loss and no hearing aids. By middle school I started wearing hearing aids, and by the time I was in my twenties, my hearing loss was considered severe and I wore bilateral behind the ear aids (the cute ear canal ones being to wimpy for my loss) and using assisted listening devices in situations like college classes where the professor wears a microphone that pipes directly into my aids. My vision history is a bit more complex. I had severe myopia at birth. I also had several strabismus surgeries, cataract surgeries and retinal detachment surgeries throughout my life. I have had years where I could see fairly well with very thick glasses and I have had years where I could not read any print at all. People ask me all the time, “how much can you see?” and my mind literally goes like ??????? when I have to come up with a satisfying soundbite length answer. What I really want to say is, “I don’t know. How much can YOU see? Can you quantify it for me? And “everything: is not an answer, nor is 20/20. When you can answer that, I will be able to answer for mine.”

Here is why I cannot answer that question easily. I will try to describe for you as best I can how “much” I can see, and seriously, if you have an idea how I can cram this down to a sentence that will satisfy people, let me know. (I’ve tried, “I can see some, but not well. I’ll let you know when I need assistance, Thanks.” Doesn’t seem to cut it.)

  • My left eye has some light and color vision only during the day and when I think about using it. Most of the time I don’t. This means that my peripheral vision on my left side is non-existant. If I squint my right eye shut and concentrate really hard on my left eye, which kind of hurts my brain, I can see some things kind of clearly about six inches in front of me, except the middle is missing. Like, if I look at the palm of my hand, I can kind of make out the edges, but the middle is nonexistent. There is not a black spot, it just isn’t there.
  • I cannot remember the actual acuity of my right eye. I do know that I have read the same Snellen chart so many times throughout the years so I have it memorized. So, when I take a Snellen eye test, I have to really, focus my brain and ask myself, what are you actually SEEING vs. filling in with your brain/memory. It is hard to know sometimes because my brain is genius about filling in pictures where I don’t have all the visual data. So, without thinking too hard, I could probably get in the 20/200 category. However, when I concentrate really hard and ask myself to only say the letters that my eye actually sees and not what my brain wants to say, It goes down to about 20/800 or so (haven’t done it in years, though so ?)
  • I have limited peripheral vision in my right eye. I have probably about a 20-50% loss of field vision.
  • I have night blindness. This means that I see nothing at night. But that isn’t exactly true. I can see bright lights at night, but they don’t offset the darkness. They just look so bright to me that it blinds me even more.
  • But it isn’t only night blindness that is the problem. Any kind of change in lighting, like going from a sunny day to a building can make me unable to see anything for up to a half an hour or so. Also, walking though light and shadows (like a forest on a sunny day) can pretty much cancel out my vision.
  • Since I really only use my right eye, I have no depth perception. I really don’t understand what it means to “see” depth, so I don’t know what to tell you about this except that I can’t catch balls under any circumstances. PE as a child was pure hell. But for most things, my brain compensates for my lack of depth perception by processing other clues like lighting, size, distance away, etc.
  • I have floaters. These are just probably scar tissue from past surgeries. They float around and I ignore them, but they get in the way sometimes.
  • I have no lenses. Lenses, which allow your eye to focus on near and far things, were removed during surgeries. I have too much scar tissue to get donor implants. contact lenses are not practical because they will only focus at one distance, so I could either see far and not near or near and not far. I prefer to just stick with the focus I have.
  • Which is about 12-18 inches in front of me. So I can see some print if I am close enough. This freaks people out.
  • I also have some other mechanical problems which sometimes affect my vision. My tear ducts do not produce enough tears, probably due to so many surgeries, so dust, pollen, or getting something in my eye can take me out for a day.

So, I can see some stuff. I don’t pretend I can’t. I use my vision when it comes in handy. More and more these days, it is easier for me to use Braille and VoiceOver on my computer. I can see some stuff when I walk down the street. And, my brain is expert at making sense of small bits of data. For example, once I was looking for a particular restaurant with some friends. They couldn’t find it, but I had an idea of where it was and I saw a light that had the rough shape of the name of the restaurant and was in the colors of the restaurant. So I pointed and said, it is over there! And then, of course, I get the whole thing, “you can see, you are a faker” jest. Well, did I see the sign like they see the sign? No, but my brain was able to put a small amount to hints together and I went with it because I mostly trust my brain to do that.

Being blind takes skill. It is skills that sighted people are not going to develop. When a sighted/hearing person tells me how great I am doing and how “I don’t even seem deaf/blind” they have no idea how much my brain is processing and putting together and how hard I have to work for it. I sometimes wonder what would happen if I just walked down the street and snapped my fingers and then everyone on the street could suddenly see and hear like me. Their radius of sensory information has just been reduced to 2 to 3 feet. I continue to walk down the street while they fall to the ground huddling in fear and helplessness because they are too afraid to move forward an inch. Their brain will adapt and they would learn the skills to be just like me eventually, it isn’t anything special that I am doing. It is just a different skill set. The problem is, because I “do so well,” I get the faker label and no respect for what skills and work I am doing to “do so well.” I know they mean it as a compliment when they say it, but for me it sounds like a slam of who I am. Doing so well sounds like doing it non disabled. And I have no problem with who I am. I am not trying to be non disabled.

So, I have dealt with this faker label with my cane. And when I was young, it was puzzling to me what I should do about it. In certain circumstances, I totally could pass as sighted. My mother would urge me not to take my cane when I was with her because she did not want to deal with the attention and baggage that goes along with it. So, I could do that. It was easier when I was younger. But I could not do it all the time. And I risked not only my own personal safety, but looking like a drunk or crazy damned fool when I fell off the sidewalk on occasion. To not use a cane or a dog to run to my mailbox is not that big of deal, to not use a cane all day was constant anxiety. Every step is taken with some trepidation and although I might have looked fairly normal walking down a familiar street, a change in lighting or an unexpected bit of construction or obstacle could stop me in my tracks. A day without a cane was like a hundred little episodes of thickly veiled fear mixed with relief that I got through those few tentative steps…but always wondering where the next bit of trepidation would be. When I think of those times of trying to “pass” I remember just an overwhelming sense of anxiety that I had to constantly hide.

I tried not ever using my vision for a time. Basically, instead of passing for totally signed, I tried passing for totally blind. But, besides that this is dumb and could have gotten me into even more trouble, even if I didn’t use my vision, people perceived me as using my vision. If my head moved or eyes moved toward a sound, they thought I was using vision. Short of plucking my eyeballs out, this wasn’t going to work, either. For awhile I tried this thing where I was going to use my cane “perfectly honestly” and only bring it out when I needed it. But that put people right over the edge. I would spend time with people during the day without it, then as it got dark I would casually mention that it was getting a bit harder for me to see and I would unfold it from my bag. People went bonkers and would literally slowly back away and leave me all by myself, if not openly mock me.

In my early 20s, I decided to get a guide dog. I did this because my hearing was getting worse and because other partially sighted people told me it eases the faker burden that the cane carries. This was in the early 90s. And so I went through the year long vetting process and the month long training and got my first dog from The Guide Dog Foundation for the Blind in New York. It was great! It solved almost everything.

Besides that dogs are cuddly and fun and great companions, guide dogs are essentially a mobility tool. You still have to have mad orientation skills and your brain still has to be on top of everything. Guide Dogs help you in the micro travel, like a cane does. Only better. Guide dogs get you around obstacles with grace and ease and help with keeping a straight line. I tell people that a cane is like pencil and paper and a guide dog is like a word processor. You still have to know how to read, write and spell, but it is a whole lot easier with a word processor.

Because I am deaf blind (by legal definition, I am deaf blind. Deaf blindness, like blindness, affects most people only partially) having a dog helped tremendously to open up my radius. Rather than 2-3 feet, she gave me subtle cues of up to a block away. I could tell if a person was approaching me or behind me, and even if I knew them or not.

But more than that, my dog became a social bridge and a buffer to the whole faker label. People loved to come up to me and talk about dog stuff. It got old, but at least it was an in to having conversations with people and putting people at ease. Further, back then, the dog seemed to give some legitimacy somehow to my actually being a blind person and not a faker. Back then, it seemed like guide dogs were respected and revered and people thought that you must really need one for legitimate reasons if you were able to get one. And I do think that they thought that some of my “doing so well” was the dog “doing so well” for me, although that probably wasn’t totally the case. In any case, the faker label all but disappeared. Those years of my first guide dog were the nicest I was ever treated by the public.

The "glory days" of guide dog use. In the 90s, people seemed thrilled to meet us and learn about guide dogs and blindness or otherwise connect.

The “glory days” of guide dog use. In the 90s, people seemed thrilled to meet us and learn about guide dogs and blindness or otherwise connect.

I was pregnant when she died at 13 years old. And because of my pregnancy and getting used to motherhood with twins, I did not go back right away to get a dog. I half caned and half went along with my kids in a stroller, at times using the stroller as a mobility device. During this several year gap that I took between dogs, I got the old faker label back again sometimes.  Oh well.

My husband, who is totally blind, got his second dog and I used his dog a few times which gave me dog fever again. Also, my husband saw the different ways he was treated as an obviously totally blind person (his eyes are disfigured) and the way I was treated as a partial and it made him mad. He suggested that my getting a guide dog again might help with that. So back I went to New York for my new dog. She is wonderful. She helps with all the things that my first did. The first weekend she came home I took my kids to a theater. And as we shuffled out with the crowd, we were stopping and going and in my mind we were further from the top of a steep flight of steps than we were.  She stopped at the steps and refused to go until she saw me realize that it was a flight of steps. She saved me from a very embarrassing and possibly injurious tumble!  I deal with things all day long like this, but people just notice that I might be able to read a sign if I walk right up to it. My vision and hearing are worse now than they were with my first dog, and she has opened up that small radius again. She makes my life easier in so many ways.

Except one. My faker label is stronger than it ever was.

Things have changed a lot since my experience with my first dog. The use of service dogs has exploded. They are much more common to see and many have questionable training and are not so well behaved. While it is great that so many people can take advantage of the vast amount of services dogs can do for the disabled, it has caused a deflation in the reverence that people seem to feel for the dogs. There are no national laws or standards on dog training or designation, and so anyone can say they have a service dog now. Many of these “self-trained” service dogs are wonderfully behaved and perform needed services for their handlers, and then many are not. And then, some non disabled people try to pass off their dog as a service dog, as there is no real way to enforce service dog rules. Under the ADA, service dogs are allowed in public accommodations. The manager is legally able to ask two questions: 1) Is that a service dog? and 2) What services does he perform for you? If you answer in the affirmative and list off some legitimate sounding services, they have to let you on your way. You still have a responsibility to keep your dog under control.

With my first dog, I may have had an issue with her in a public place perhaps once or twice a year. Now, I have to go through the rigamarole almost daily. It is pretty much standard now that everywhere I go I am asked those two questions. It isn’t terrible to have to answer them in and off themselves, but then what happens when you have some usable vision is quite problematic.

My husband also gets asked about his dog as well, but after he answers the two questions, he is sent merrily on his way. With me, its different. Since it is somewhat obvious that I have some vision and my hearing aids may be covered by my hair, I get met with hassling and disbelief. It goes something like this:

I walk into the store:

Clerk: That dog can’t be in here.

Me: She is a guide dog?

Clerk: She is a service dog? (Incredulously)

Me: Yes

Clerk: What kind? What does she do for you?

Me: She is a guide dog. I can’t see well and she helps me to avoid obstacles and navigate steps.

Clerk: You can’t see? You can’t see me?

Me: I can see some, but not well. I am also hearing impaired so she is a help there, too.

Clerk: (Waves hands in front of my face) Nooo. You can see. You can see my hands. You are tricking me. You see me. Where did you get that harness? It doesn’t have a sign.

Me: My harness came from the school she was trained at Guide Dog Foundation in New York, you can see their name on the strap across her back.

Clerk: Are these your kids? If you can see your kids you don’t need a dog. That dog isn’t a service dog…

I usually end the discussion and go about my business as if I have no idea that I am being stared at and whispered about.  I have not been thrown out of any place yet, but it is a constant hassle. A more subtle version of this is when they don’t start waving their hand in front of my face but might start testing me the whole time by pointing at things to see if I can see what they are talking about or once someone kept moving my credit card around instead of handing it back to me to see if I would notice.

Other times, I just get sort of a “yeah, right” treatment. People aren’t necessarily outright mean, but they don’t engage or engage minimally because it seems as if they are too confused or unsure of how to deal with me. I also get the “you don’t look blind” business a lot.

I don't even care what they say. I love this dog and I'm keeping her! She is such a good guide and deserves some respect, damn it!

I don’t even care what they say. I love this dog and I’m keeping her! She is such a good guide and deserves some respect, damn it!

It is disappointing, because I feel like no matter what I do, I can’t put the public at ease and it is isolating. If I don’t use a cane, I risk my own safety and I look like a trippy, drunken fool half the time. If I use a cane, I get called a faker or distrusted. If I use a dog, it is now almost worse, although accommodation-wise, a guide dog is what helps me the most to work within my disabilities. The only thing I know to do is to try to educate people and move on. Thankfully, there are people who do ask questions, learn from my answers and develop an understanding about my situation. It doesn’t seem like that hard of a concept that some people don’t see well enough to necessitate a mobility tool even if they do use their vision sometimes.

Research has shown that those with so-called partial disabilities (ie. those who use wheelchairs but can walk some or those who use dogs and can see some, etc.) face verbal and physical harassment/abuse and discrimination at rates even higher than the already high rates of the more “traditionally” disabled. I think part of this comes from strict definitions used by government programs that define disability in very black and white terms, and also a backlash against people who use services or accommodations as “not deserving” them if they are not the most severely disabled. It is akin to the mythical “welfare queen” that supposedly buys lobster and filet mignon with foodstamps. These stereotypes have proven again and again to be almost universally untrue, but still these attitudes of “catching someone getting what they don’t deserve” persist. In truth, the vast majority of people who partake in these services are doing everything they can to thrive and be productive citizens by using the very accommodations they are being accused of taking advantage of.

I also think that some regulation is going to have to come down about service dogs. This is another case where a few who are not playing by the rules are ruining it for the many who are. I think service dog teams should have to be trained by an accredited trainer or training school and/or take a test on basic decorum plus whatever specific skills the dog performs to assist the disabled user. Then, some kind of hard-to-counterfit badge or signage should be issued upon passing the test and should be carried or worn by the dog or handler. Outreach and education will be needed about this regulation and badge and rules about hassling users should carry some consequences. Counterfitters who have fake service dogs should face severe penalties and fines.

There is push back from this even by service dog users because it is a hassle to get your team certified and who will pay for it and implement it. So I realize that this regulation has a ways to go before the kinks can be worked out. Until then, it would be really nice if people with fake or poorly trained service dogs could think about the rest of us and the amount of hassle they are causing us. And it would be nice if the public could also realize that not every blind person sees nothing, deaf person hears nothing and that not all disabled people use wheelchairs. I don’t think I should have to prove to every store clerk and McDonald’s employee that I can’t sense their hand waving two inches from my face in order to go about my business in peace.

Purple Feather Blind Beggar Viral Video…I just can’t even-

So, here is the focus of today’s discussion, a video by a UK advertising firm Purple Feather. It has been going around on Facebook for a few years now. Depending on what version reaches you, it can have tens of thousands of positive comments. Comments that talk about how inspirational and beautiful and meaningful it is. It’s not even original in its advertising for Purple Feather. It is based of a story told in the 60’s by original “Mad Man” and advertising legend, David Ogilvy. For those who need it, I offer this brief description:

Sentimental piano music plays throughout. An older gentleman sits on a piece of cardboard in front of some cement steps in a busy city center plaza. He has a tin cup next to him and a cardboard sign that says “I’m Blind, Please Help.” A few people walk by and offer him a absentmindedly tossed coin or two, but most walk on by paying him no mind. Other people are shown enjoying their day in conversation or at coffee shops. The blind man pats his hands around in front of him to find the coin or two that has been thrown his way. A young woman dressed a black coat and wearing sunglasses walks by. She backtracks and stoops down in front of the man. He feels her shoes. She takes a sharpie and turns his sign over to write on the back side, then replaces it next to him and walks off. We don’t see what the sign says. But now, many more people throw many more coins at him. He can hardly pick them up fast enough. Later, the woman comes back and stoops before him again. Again he feels her shoes. He recognizes her and asks her what she wrote on the sign. She says she said the same thing but in a different way. Then patting him on the shoulder, she walks off. Now the cardboard sign is shown. It says, “It’s a beautiful day and I can’t see it.” The video fades to purple with the text, “Change your words. Change your world” and then the PurpleFeather logo and URL are given.

I pretty much ignored it the first time it went around. But recently it reared its ugly head again. It infiltrated my family. My father’s wife posted it. Now, I have long since stopped having high expectations for my family–at least the older generation–understanding disability civil rights issues despite my upwards of 25 years of trying to influence them. My father is incapable of giving myself or my husband any sort of compliment without adding “for a blind person” at the end of it. “You cut the grass pretty well for a blind person.” “This dinner is pretty good, considering you can’t see.” My husband and I have raised 5 children, traveled internationally independently, gotten degrees, held jobs, run our own business, etc. But we still are only doing ok in my dad’s low socially influenced standards of how blind people live. I told my husband the last time we were laughing about all the “for a blind person” backhanded compliments that he could invent and perform a microsurgery that cures inoperable brain cancer and my dad would still say that this was pretty good “for a blind person.” We don’t worry about it. (ETA: My family member did remove the post after I protested.)

But there was something different about representatives of my family posting stuff like this on Facebook. It advertises publicly their prejudice and ignorance, which is bad enough. But for those friends/family who we share in common, it somehow implies that I endorse or condone this type of “inspiration porn.” That if the blind person’s family is putting this up, it must be ok. And it is not ok. Let me count the ways.

Panhandling

Panhandling and its frequent accomplice, homelessness are complex issues, and in the video, we are given no context as to why the man is panhandling except that he is using his blindness to solicit money. Although a century ago, it was quite common for the disabled to have no other options than panhandling in the streets (the term “handicap” came from the expression “cap in hand” as many disabled used to use their caps instead of a tin cup.) After decades of disability self-advocacy groups fighting for their civil rights through legislating things like the ADA and developing and promoting technologies that allow the disabled to work, we now know (or should know) that disability itself, most especially blindness, does not mean that a person cannot work. There are blind lawyers, doctors, nurses, teachers, artists, scientists, etc. Pretty much anything you can think of, somewhere, a blind person is doing it. However, blind people still fight upwards of a 70% unemployment rate and a significantly higher level of poverty than the general population. If we know that blind people can do almost every job and compete equally in the workplace, how can this be so? Because the problem is no longer lack of ability or aptitude, it is lack of opportunity. Many blind people lack quality education and skills training that teach them the alternative skills of blindness. They are denied access to colleges and universities and if they do get in, are often denied reasonable accommodations to do their classwork. They suffer discrimination in the workforce when people believe they are not capable.

We don’t know why this man is panhandling. He could have just lost his job. He could suffer from addiction or mental illness. He could be a greedy, lazy sonofabitch who just wants to take advantage of people’s misconceptions about what blind people can do. It could be tangentially related to blindness. He could have been denied quality training and opportunities to work in the community. But I do know this. He does not have to panhandle because he is blind in and of itself. He is using blindness to gain sympathy because he knows that this is probably the most acceptable asset he has in the panhandling business. I make no judgements against panhandlers, disabled or not. It is a rough world out there and we all gotta do what we gotta do to survive. So (if he were a real person) I don’t judge him for panhandling, I judge the advertising firm for using his blindness as inspiration porn.

And talk about old, used, cliche’d messages. Talk about “change your words/change the world.” Purplefeather showed no innovation in advertising here, they showed how outdated and uninspired they are. They used another person’s story from half a century ago with an old cliche. If they really wanted to “change the world” for this blind person, they could have maybe come up with something that would have had the public standing up for him in ways that really mattered. What if someone would have offered him work? Or educational opportunities? Or at the very least, asked if he was ok and if he was able to get to the nearest shelter or food kitchen. What if they would have shown competent blind people advocating and legislating for change in discrimination laws and then showed how these laws changed his life? I am sure there are a lot of creative slogans that they could have come up with there that would show their advertising prowess and “changed the world.” Would you really hire this ad firm based on this cliche’d lack of originality?

Self-Determination

If the panhandling while blind meme wasn’t bad enough, the video goes on to surrender to every single stereotype about the passive blind person who needs a sighted person to save the day. We are supposed to admire this hero, this woman who changed this man’s world. But really, she was rude and disrespectful. She comes up to him, says nothing, changes his sign without telling him what she wrote on it, and walks off. He apparently was rendered mute here. He cannot speak up and ask her who she is and what the hell she is doing, he is left to inappropriately FEEL HER FEET to gain information about what is happening around him. She could have been taking his money, or writing “Please Fuck Me Over” on his sign. He doesn’t know, and she doesn’t tell him. Believe it or not, us blind people are capable of obtaining information we can’t see. We have mouths and we can ask. We don’t need to grapple, hands outstretched pathetically, at people’s faces or shoes in silence. Every single person was rude to that man in the video with the possible exception of those that walked right by. I have occasionally been in a position to give money to panhandlers, and I would NEVER throw it at them as if I was throwing table scraps down to a dirty, feral cat. I would always say at least some sort of greeting and either hand it to them or put it in their container provided. What makes the fact that MORE people throw money at him after she changes the sign any more compassionate? Of course the grappling that he has to do to find the coins around him is very dignified, too.

The Message

Whatever we think about the man using his “I’m blind, please help.” message, it is implied that he wrote it. The message is one of action. Please help. It is his own words, in first-person. It is polite, but direct. If he truly does need help, this is exactly the correct way to ask for it. But apparently, the message is that this call for help was not good enough for the passers-by. Pehaps they, too, are tired of the blind beggar cliche. This video takes place, presumably, in the UK. The UK has a very complicated relationship with its disabled citizens. They suffer an extremely high amount of harassment and ridicule, much more, it seems, than in the US. It is common to have to listen to hollered insults, and there have even been reports of blind people having their canes nabbed as a prank. Referring to his blindness might have gotten him in trouble there, rather than helped him gain sympathy. But ‘Please Help” at least attempts to solicit the needed action.

So our heroine blows in with her variation of the same line, what difference would it really make? First of all, it plays on exactly the same sympathy as the “I’m blind” sign, although perhaps with somewhat more poetic wording. But the wording is also passive, and passivity further enforces the stereotype of the poor, helpless man in need of saving. But, I’m being silly. The video has nothing to do with helping the man in any way. It is pure inspiration porn. It is meant to illicit a good feeling in the able-bodied person. To inspire them to think about how lucky they are and how grateful they should be in comparison to the poor, helpless blind man. I mean, he can’t see the beautiful day!!! In no way can blind people enjoy a beautiful day in any other way besides seeing it. And as such, their lives have no quality and meaning, right? Feeling the warm sun on your face or smelling the fresh cut grass or listing to happy children playing or being able to wear summer clothing and feel the light wind on your body mean nothing in comparison to seeing a bit of blue sky among a bunch of cement buildings. It does not matter to the heroine or to anyone what this man really feels about the beautiful day or his life within it. He can’t see it and we have decided for him that inherently that lowers his quality of life. It makes us feel such warm, fuzzy feelings of gratitude for our own vision and pity for him that we throw him a coin or two for doing his job.

What was his job? It’s the same job as society expects of all disabled people. We are supposed to perform, in a 1-2 punch delivered exactly the same way with real or imagined sentimental piano music playing in the background. Step one: make people feel pity for us due entirely to their perception of how our disability affects our lives. It does not matter what the reality of our disability is for us, they need the pity narrative because it is essential for step 2. Step two: inspire them by “overcoming” our disability and “rising above it” as if it is some huge obstacle we need to climb around or over rather than an integral part, along with a myriad of other complexities, of who we are. If we cannot rise above it, like perhaps the blind beggar could not, then we need to use it to show people how grateful they should be that they are not us. And we need to do that gratefully, as to let them know that we appreciate their goodness is throwing us their scraps to somehow allow us to subsist even though our lives aren’t worth living. We are your inspiration porn. Here solely as fodder for you to make yourselves feel better. “It’s a beautiful day and I can’t see it!” Most blind people would say, “yeah, and? Get on with it.” But to do so would be us not doing what society expects. We are here to make you feel better about yourselves because at least you aren’t us.

Would it have worked? If you had two similar blind people who were begging on opposite sides of a block; one with the first sign and one with the second; who would get more money at the end of the day? Who knows? And that isn’t even the question an advertising firm who promises to use words to change the world should be asking. You still have two blind beggars on the street. When there are so few examples of blind people in the media, and those that are seen are often portrayed negatively in piteous and incapable ways, what could a creative advertising company do to change the world? They have 60 seconds to send a message about the power of words and their originality in creating them for us. They could play on an old, tired, stereotypical meme that is half a century old, or they could have really come up with something good. What about a scenario where they were advertising for a self-advocacy group like the National Federation of the Blind? What if they showed a highly capable blind person who was struggling to get a job due to discrimination and they came up with a slogan to break down these barriers? Wouldn’t this kind of campaign be a bigger example of changing the world? They chose to exploit an already marginalized group in ways that promote stereotype and discrimination. And what did they accomplish? Well, maybe they have a way that a blind dude can make $15.35 a day rather than $7.21 a day. But in doing so, they have done more to cement the oppressive ablism that likely put that man on the street to begin with. They could have used some amount of creativity and imagination, and ACTUALLY changed the world for the better.