*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.
- 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.
- 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.
- 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.
- 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.
- 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.