Ableism comes in many forms

I am on a FaceBook group for siblings of folks with disabilities. Often folks ask for advice or support. Sometimes they commiserate about some hardship. Sometimes they complain or feel sorry for themselves.  Some revel in their experience, some wallow, some fight back.  And some attack.

One instance I recently encountered sent me reeling and I still have not fully landed. 

A member reposted an image form a different FaceBook group of a set of sibs with the following quote:

"I am a sibling of someone who has special needs. I believe this is the best thing that ever happened to me because now I see the world through the eyes of possibility."

In her repost she added the comment, "I know this is true for some sibs, definitely not for me. I love my brother but it's a life fraught with difficulties and pain. I sometimes think parents need to believe this positive spin to feel better. What do you think?"

I was rather shocked by the torrent of negative comments about the quote and the rallying behind the reposter. "I love my brother. He's a great guy. But he is most certainly not the best thing that ever happened to me. I doubt very many typical siblings even feel that way about their typical sibs. Please. The BEST thing??? He might have been the biggest thing in my personal growth. Maybe. But my husband and kids are the best thing that ever happened to me. And possibility? This is the best they could do??? Possibility of WHAT? right?! My possibilities are so limited as a result of so much responsibility at a young age and anticipated responsibility in the future."

Then the buzzword "toxic positivity" started flying

"Ugh. I think this is a great example of toxic positivity. It's kind of reductive for something that can be pretty complex. Sure, there are plenty of good effects of having a disabled sibling, but also lots of negatives. Not to mention all the burdens of expectation for future care that so many parents put on their typical children. It also begs the question, "possibility for who", because those pressures for future care seem to cut off possibilities for the future more than they create them, especially limiting possibilities for the life of the presumed caregiver."

"I have mixed feelings about this. Yes, I think as sibs we become more empathetic and we’re attuned with knowing people have different lives and backgrounds and family circumstances. HOWEVER, this definitely sounds like toxic positivity."

And so many presumptions.

"I love my brother so, so much. And I love that working in a field related to him and other adults like him has in some ways made me a more considerate person. But I’m not seeing what these possibilities are this post is referring to. Would I change my relationship with my brother? No. Like I said, I love him as he is and he’s the sweetest person I know. But the best thing? I don’t think so. This had to have been made by someone who isn’t one of us—an actual sib or family member who knows what our loves entail or has entailed. Or it’s a parent who thinks they know what their neurotypical child is thinking. Guess what—they have their own thoughts."

So I had to post a response: "I love my brother. We are great friends. We had a great childhood full of adventure. We hung out together through our 20s and 30s, and even lived together. We are still close though we live in different states. Having my brother is one of the best things to happen to me. His disability is not a factor in this, however. We just really like each other. Maybe I’m in the minority."

And the original poster replied to me: "Or your situation is just very different and that's great."

Exactly--maybe my situation--and MANY OTHERS including the original poster's--are very different. Maybe we are all very different as are our siblings and their experiences. It made me sad and a bit angry that a nice post about a sibling believing that having a sib with a disability was the best thing for THEM turned into something so negative. Several posters also said the post was "inspiration porn" a term coined by disability advocate Stella Young. Inspiration Porn is when folks without disabilities hold those with disabilities high up on a pedestal to be admired, to be an inspiration to the rest of us. The old "if the guy with a disability can do it, gosh darn it, so can you!" adage. But I have to disagree. I do not think that every time someone shows esteem for a person with a disability it is inspiration porn. I talk about my brother who has a disability a lot! I do not do it as inspiration but rather because I am proud of him and because I want to share his accomplishments. I do the same for my son and nephews and cousins and friends. It is not inspiration porn when I talk about their accomplishments, but suddenly because my brother has a disability it is seen in a negative light. It is viewed as using him and his disability to inspire others to keep trying. That is sad and misguided. I think the folks whose minds automatically go there are the problem, not those of us who are sharing the feats of our disabled comrades. This is ableism at its best.

Disability is not a subject for show and tell

    I can remember when I was teaching, “cultural diversity and sensitivity education” was popular for both the students and the staff. We had guest speakers, discussion groups, folks who volunteered to share stories about their heritage, and book studies from a diverse set of authors with a diverse set of topics. But one aspect of cultural diversity that was never included was disability. I brought this up to our leadership and they agreed that it should be included. I was pleased until the lessons regarding disability were presented. A common approach to disability education is the use of simulation activities. Presumably, the idea behind this practice is that allowing individuals without disabilities to “try on” various disabilities, will help them develop empathy for people with disabilities, but the practice of using simulations to learn about disability is flawed and harmful.

    Some of the common “lessons” using simulation include people without disabilities wearing a blindfold, using a wheelchair, or wearing noise-canceling headphones in an attempt to feel what it is like to have a disability.  Engaging in these types of simulation activities creates a flawed and very limited perception of disability. If a person engages in an activity wearing a blindfold, supposedly to simulate blindness, they might think the activity is sort of fun or silly, leaving them with the perception that it’s fun to be blind. The opposite could also occur where they may leave the activity thinking, “Thank goodness I’m not blind.” This perpetuates the narrative that disability is tragic. Probably they will also walk away from such an activity believing that people with disabilities need help and pity to make their lives easier or better. 

    Additionally, in these simulations, when folks use a communication device or a wheelchair for a short period and then have the option to yell or run on the playground, it does not help students understand how to be supportive of people with speech-related or physical disabilities, nor does it help students understand how people who use assistive tools and supports feel about their disability. Even being as close as I am to my brother, Dave, I have no idea how he truly feels about having a disability.  He can tell me, but I cannot KNOW, much like I can never KNOW how my son feels about being a black male.  We can discuss it and I can understand academically, but I cannot feel what he feels. Simulations are intended to help with empathy and understanding.  I think they can be patronizing and further marginalizing for individuals with disabilities. As a side note, when we did this exercise at the school where I taught, my students, all of whom had various disabilities themselves, were expected to participate in an effort to be inclusive.  This was the epitome of that good old road to hell that is paved with good intentions.  I will leave it up to you to imagine how that turned out. 

  Another practice that is commonly employed in disability education is using individuals with disabilities like show-and-tell, asking them to share with their classmates, colleagues, church fellows, or teammates about their disability as a means to help people without disabilities to feel more comfortable and be more understanding of the one with a disability. When my son was in second grade, he came home excited to tell me about the girl in his class whose show-and-tell that day was the best ever.  In his words, her show-and-tell was a “fake leg.” I was at first horrified, then perplexed, then angry, as the story progressed. Apparently, a new student had started in his class earlier that week who happened to have a prosthetic leg. Her mother came to their class and told her daughter to remove and then reattach her prosthesis for the class. While this was going on, her mom informed the class that her daughter had been in a car accident as a baby that killed her parents and caused her to lose her leg.  Her Mom and Dad then adopted her. I have to believe her actions were with the best of intentions and meant to educate the class and remove any stigma from her daughter, but my son certainly missed that point completely. He thought it was amazing that she could take off her leg, but he did not identify her as a child with a disability.  She was just a classmate. He had already befriended this young lady before the class presentation and thought nothing of her prosthesis. Having been around his Uncle Dave for his entire life and being a black child with Chinese stepsisters and a white mom, my son was accustomed to diversity. The show-and-tell lesson was fun for him, but it may have backfired for others. They may not have paid her prosthetic any mind had it not been put on display.  By singling her out as different, some other children may see that difference as bad or negative.

    Once again, the construct of exposure rears its head. If people with disabilities had greater access to more opportunities, environments, activities, and settings, we would not need to engage in sensitivity training. By doing these types of trainings, we are attempting to justify their inclusion. We are saying, “See, they are just like us, only they are/have [fill in the disability].” This is very marginalizing. It reinforces that there is a “normal” and that people with disabilities are not “normal.” We need to teach children with disabilities about their disability and how to respond when people ask questions, and we need to teach the rest of the group how to respectfully ask questions of others when they are confused or curious.