I have to preface this post by saying I’m still grappling with all of this. I recognize that while I can intellectually understand something, it takes me much longer to completely “get it” to the degree that I can own it and incorporate it into my thinking. Perhaps this is a specific quirk to my neurology… Here goes – Yesterday afternoon something came up that I didn’t understand. It was surrounding the words “disability”, “impairment” and the role society plays. It was stated that autism is a neurological difference that can create certain impairments. Impairments that can lead to disability when not accommodated. I didn’t understand the concept at all. I couldn’t wrap my mind around society’s role in creating disability by not accommodating. I need to backtrack here for a second. Stay with me…
My father was in a wheelchair the last decade of his life due to a horseback riding accident that occurred when he was 40 years old. Most of us, who do not require a wheelchair, probably don’t think about what can happen to the human body as a result of not being able to stand and walk around. There are things that often occur as a direct result of being in a wheelchair for the majority of one’s waking day. Things like sores, atrophied muscles, metabolism changes due to inactivity, which can lead to constipation, a greater risk for infection, etc.
My father’s accident was my introduction to “disability” as the word my father used to describe himself. I didn’t spend much time thinking about society’s role beyond the easy to spot prejudices people obviously had upon seeing him, how some people were worse than others, either in the way they spoke to him with barely concealed pity or the way they raised their voice or slowed their speech as though he were intellectually impaired as well. I was acutely aware of the many places he could not go because they were not accessible to his wheelchair. And I was aware of the physical pain he was often in. But I didn’t think society played a role in creating his disability, but rather it exacerbated it.
I’m going to interrupt this train of thought for a second while you watch the following short video (1:26) via Ollibean, the terrific site that “unites disability-centric news & editorial led content- connecting families, self-advocates, & professionals through social conversations.”
This article (by Lisa Egan) is a great one, sent to me by the wonderful, incredibly, kind and extremely thoughtful, Nick Walker, who is interviewed ‘here‘ on Shrink Rap Radio. After I watched the video and read all the links, I felt I was beginning to understand.
My father’s accident left him physically impaired, but with the necessary accommodations in place he could still get around and do many of the things he enjoyed. His quality of life was greatly reduced because many of the things he once enjoyed, playing tennis, skiing, were no longer possible, but he could do other things, swimming, gardening, spending time outside. (Still, I feel confusion and can tell, I’m not quite there yet. I think I have an understanding, without completely understanding, if that makes any sense. And I’m also getting hung up on semantics. But I have to keep going with this.) I understand my father was impaired, but was he disabled? Obviously he was to the degree that society didn’t do a great job accommodating him, but what about his weakened body and the pain he was in that kept him from pursuing things he enjoyed and would have done had he not been in such physical pain, such as travel?
*Those of you who understand all of this, please feel free to jump in and correct me. As I said, I am processing!
Autism. When my daughter was diagnosed I didn’t think of her as disabled, in fact I remember resenting the notion that anyone might think of her as such. I understood she was different, and, sadly, I also bought into the “disease” thinking, which I’ve written about on this blog. As my thinking evolved I thought of her as neurologically different from the majority of people and as such would face more challenges in the world, than if she were not Autistic. Still later, and more recently I thought that because she cannot reliably use either speech or independent typing to communicate yet, she had a disability, but that her disability had little to do with society and was very much a result of the many issues she faced, physically, emotionally and neurologically.
The idea that society could and should do more to accommodate her and those like her is something I have witnessed first hand and am fighting for. Yet, this idea that society created her disability, either some or all of it, is a new concept. So last night I spent many hours reading. This post from Savannah on her blog, Cracked Mirror in Shalott is terrific with great links to four other bloggers whose work I have tremendous respect for: That Crazy Crippled Chick – A Musing on the Word Disabled, Radical Neurodivergence Speaking – In this place, in this activity, I am not disabled, Yes, That Too – Ablism is to Blame and Autistic Hoya – Constructing Disability. And finally this piece from Sparrow Jones, Voices of Experience on her blog Unstrange Minds where she writes, “In contrast to impairment, Reindal writes about disability as the “barrier to being,” suggesting that the social constructs that view those with impairments as lesser beings, not worthy of inclusion or accommodation, creates an existential crisis that extends deeply into the disabled person’s core being.”
And this is why all of this matters so much. Because we as a society are adding to impairment. My child is Autistic. There are things that are much harder for her to do than the majority of the population. Her hardship is exponentially increased by society’s lack of accommodations for her and those like her. This post about my experience at the AutCom Conference last fall is an example of simple accommodations easily put into place. My daughter’s life will be infinitely easier if people were better informed about autism and what that means.
Society plays a role in all aspects of her life, from the education system and how we perceive inclusion, to air travel, where she could be allowed to sit by the window to accommodate her need to look out the window to better manage her stress, just as someone in a wheelchair is given an aisle seat and not expected to sit just anywhere. I could go on and on, but I’m interested to hear from all of you and hear your thoughts on all of this.
Emma and Henry type to each other with Pascal and Harvey’s assistance
Emma's Hope Book 
Society plays a huge role in disability instead of accommodating people like me so we can do things for ourselves people do things for us thus crippling us further.
It’s tricky knowing when it’s being of “assistance” and when it’s not. My father hated being helped with certain things, but then very much wanted help with other things. I never knew and so learned to ask, but sometimes that would anger him too.
Asking… that’s something I’ve learned specifically from my Autistic friends.
yes asking is the thing to do 🙂
Ahh so well timed Ariane. I think this belief needs to become the norm in the society: We are all different, differently abled and with different needs. None of us is any better or lesser because our needs might not match another’s. If we looked at each person as a whole, I think we will finally see some beauty. I raised my kids with this motto: Never judge people with the way they look or where they come from. Judge them with the content of their hearts, strength of their thinking and how well they are able to serve others while how well they take care of themselves. We each have a responsibility on this earth to live responsibly and lovingly. You are making so much difference with your writing compelling all of us to think and to be better version of ourselves. Thanks you.
💕
Thank you for this important post, Ariane.
I think it’s important that lots of organizations (you know my interest with actionplay.org is training arts and cultural orgs) learn about folks with sensory differences and disabilities. I think it gives them the chance to provide accommodations. I think most people are just scared of the unknown.
Glad you are out there doing all that you are Aaron. You and I have spoken about my search for an acting/theatre program that was inclusive, not just for those with disabilities, and not just for those without. It continues to amaze me that in all of NYC there are none that are diverse.
az, i am going to read all those blog links above and get back to u on this intriguing issue. thank u. window seat 2 b
💕 you beautiful b.
What I have learned in the past few days: with my identity solid, healthy and intact, there is nothing that can truly harm me. Struggles will happen, things will be hard, but when I am at peace with myself and feel whole, they cannot *harm* me and I will find my way through (like all humans) with my own burdens and hardships.
The damage, I think, the true disability comes from society’s refusal to allow that identity to be whole–or even what it is. Before diagnosis, people would tell me who and what I was. I accepted their version as truth. After diagnosis, I began to see that my unique identity had been malformed and misappropriated by others all my life.
Now, post-acceptance, I see and feel this continued societal shaping at work and I refuse it. Often it can be subtle, like an authority figure demanding you remove what appears to them as dark glasses as they fill in the blanks about why you must be wearing them inside. At this point in my life, I fear no stigma, and burn with the desire to change that societal story by standing firm and remaining honest, explaining to those who question that my glasses are filters which allow me to function under fluorescent lights, they are prescription and cannot be removed; they are not sun glasses or intended to be disrespectful. When my identity is firm, I am able to ask for the necessary accommodation without fear, I am able to negotiate my struggle without additional burdens of stigma and increased anxiety. In this state, I remove the disability from something flawed about me, which I must fearfully cover, extinguish or allow to burden others. It becomes simple truth, a fact of who I am, and non-negotiable.
I think society as a whole wants to define these things in ways that shame or stigmatize the disabled person–to view them as less than, a burden, a problem: something that needs fixing before acceptance can occur. This is the crux of the concept of a “disability”. Once our differences are accepted, and abilities allowed to be what they are, truly there is no disability any longer.
All of us, as humans, have strengths and weaknesses. All of us struggle every day of our lives. Who is to say that we should all struggle in the same way? The answer is to be understanding and compassionate about each other’s deficits, and to work (as a society) to fill one another’s gaps.
Sorry…didn’t mean to get to verbose. In processing this one right now, too–hope my wondering on the issue helps your wandering (as you have also helped mine this morning). Peace. 🙂
“hope my wondering on the issue helps your wandering” It does! It really, really does.
I, too, went through this process of learning the difference there is between what is effectively the “medical model” of disability (where the disability = the impairment = “something wrong with you”) and the “social model” of disability (where the disability = not enough compensation / accomodation for the impairment on the part of society in general). I think I have a handle on it now (it helped that I was getting this through my job as an intern to an Independent Living Centre), but it did take me a while, and reading through what I was given a few times.
It’s essentially saying that yes, one might have an impairment in terms of “normal” people (is there anyone that actually does fall into the category of “normal”? Really?), but that it only becomes a disability when society doesn’t accomodate for it. At least, that’s how I understand it. *shrugs*
🙂 tagAught
I am really lucky that I have such wonderful friends who are patient with me and willing to hang in there and keep explaining. I think this is one of those concepts I really have to process and for me, my processing time may take a little while. (I like your shrug) 🙂
*shrugs again, grins at you*
Works. There are definitely concepts that I have to chew over, and over, and over again before I absorb them, so I can understand that. And yes, the friends I’ve made in this “circle” of web blogs are great, and supportive, and willing to explain things, so I definitely understand that too!
{{{Hugs}}} to everyone in your household! (Especially Emma, of course! ;))
🙂 tagAught
I always tell people that your diagnosis can be a tool, or a burden depending on how its used. I agree that the idea of abnormal-normal and how we define such things is a big problem in our society. At the same time, I think people have the right to be educated and learn respectful accommodations without stigmatizing people. DIsability-is a legal term if you are interested at all in ADA, and I think it has wide reaching possiblities if it is viewed in such light.
This was a really thought provoking blog from Sharon Shapiro-Lacks as well on the subject if people are interested-and I am not saying I totally agree, but certainly made me think:
Here it is. http://www.yadempowers.org/yh-views/disability-vs-special-needs/
Interesting. I’ve never much cared for “special needs” either. Always rang of condescension to my ears.
Ariane, I think Jenn should comment on this…maybe we can link up at the ICI summer Institute to chat? Good excuse to see you again!!! My thought is, if we could get our children with diabilities into the Universal Design in Learning classrooms, they would be seen as “normal” but learning differently and in time, would be accepted by society more readily. Society is grossly ignorant when viewing a disabled person. The mores of the past instilled from generation to generation carries through until there is a glitch in the family, meaning a child is born with a disablitiy or develops a disabiity for whatever reason…then education and acceptance begins to trickle down to immediate family members and extended friends and family. Some of them “get” it and some do not! If this does not make sense, I apologize, ignore me!!
Yes, I actually just assumed I would get to see you and Jenn! And what you’ve written does make sense to me.
Hooray! Jim will be there on Wednesday…will do the drumming with Jenn and Marilyn.
In many ways, I like the idea of “special needs” instead of disabled or impaired. Special needs indicates that a person has needs, that if met, will allow them to function well (or at least better). It is another of those terms that has some negative connotations, but I wish it didn’t. Everyone in my direct family has some sort of “special needs”. My in-laws both use electric scooters for different reasons. My Mom needs a cane or wheelchair to get around. My husband and I are both Aspies. He doesn’t like people in his personal space, and needs a cubicle at work that keeps people from walking behind his back. I also have fibromyalgia. In order to do something like an amusement park, I need a wheelchair or scooter. I cannot handle that much standing and walking. One son has ADHD and SPD. My other son is autistic with ADHD and SPD. Both kids (and I) struggle with loud noises. I carry earplugs and headphones everywhere since any of us could need them while we are out. The list goes on and on.
For us, this is normal. We are always accommodating SOMEONE in our family. We each have our own “special needs”, and by understanding those, we are much happier and more successful.
Just to clarify the Miracle Project has always been an inclusive theater program. We actually started it as a sibling program to include neurotypical sibs and peers. We have brought the program to different settings where the ratio has little different, but our goal has always and will always be total inclusion, and we are currently expanding to train more folks- and offer the program on a much wider scale. Our NYC classes that we have currently I think provide a great model for how important inclusion is to theater making-
This is good information to know, Aaron. I did not know Miracle Project was all inclusive, I thought it was specifically for autistic kids.
Thanks for clarifying!
This is going to be long, please read to the end. 🙂
Florentina, my daughter is 16. She was born on a train in Romania and I became her mom when she was 3. Since that time she has been labeled and diagnosed with, to include but not limited to: Developmentally Delayed, Intellectual Disability, Mental Retardation(I know, this one made me throw up), Sensory Processing Disorder, Auditory Processing Disorder, OCD(at time debilitating), Autism. Vaccine Injury(yes diagnosed by 3 MD’s and a Genetic Specialist), and a host of medical issues with the most prominent relating to her Gut health and heavy metal toxicity.
Through-out her years in the public school system, she was kept isolated, walked in the halls and not provided any type of education as the staff “didn’t know what to do with her”, abused by staff, threatened with force and intimidation and generally discriminated against, and this was just in the schools. (We home-school now)
Within society, discrimination came from other parents, even other parents with “special needs kids” – please see http://www.flippingtheswitch.org – a short film project with a background video on how she overcame through her art.
She was denied entrance into a school specifically for kids with autism that offered an arts based curriculum. Even though she had letters of reference stating the arts were the key to her success.
For 12 very long years, there have been a couple of very welcome exceptions where people/educators recognized who she is as a person and used her strengths to put together a program of inclusion. Again, through art (and music).
I have been searching and searching for a community for her, and I, to be welcomed, to be included without conditions. We have moved cross country 2 times and are about to venture back to California for http://HiddenWings.org – an arts based school without walls that celebrates the child, beyond the differences, for teens to adults.
It has been a draining and heartbreaking adventure, but one that is also met with hope, unconditional love and laughter. If you met Florentina, you would understand.
All I want for her, for all of us, is for folks to take a step back and realize we are all connected, we are all one. It’s not a contest to compare or to dispute one another on our own individual experiences with our kids. Beyond the labels, we all need and deserve respect, friendships, community and love.
http://FlorentinaSong.com is her website.
In Oneness, Andrea
Hi Andrea – Yes, I’ve watched the video and shared on FB as well as tweeted. Wishing you both great success!
Thank you for this post. After my son was diagnosed I went to a resource fair. On all the banners the word “disability” was written on all the walls. This made me so sad I stepped out and cried. A friend came by and asked what was wrong. She said she also had a hard time with defining her son this way and preferred the term Differently Abled. So I have always thought this way since.
Andrea, I love your last paragraph. I embrace that. 🙂
My biggest stumbling block with all of this is where the physical issues are so prominent they impact quality of life (constant pain, inability to do basic things, necessity to rely upon others to bathe, toilet, eat, etc) and how all of this fits into that. I’m trying to figure it out and will need to reread many of these links… and probably will need to ask more questions, too!
In a perfect world, we would grow to know ourselves and our needs and become self-referent. Other’s opinions and intolerances would not matter. This is the task, with or without a label (I think). The world is full of intolerance and even people without “labels” have labels they did not ask for. Ignoring them is adaptive. Ideally, then, we surround ourselves with people who love us for who we are; environments that are not over taxing. Life is good…………..
Love this!
me too!
Reblogged this on mpnENGAGED and commented:
Worth pondering………..
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Great post with great resources! One of the things I love about your post is that you are so open about your process of coming to understand and integrate this. You didn’t wait until you totally got and then wrote a post about it without mentioning this process. I think that willingness to show vulnerability makes your blog all the more powerful.
The concept that it is society (or individuals, institutions, etc.) that disables people is a big deal. I want to say it is exciting, but of course the reality of it is not a good thing. But the realization IS exciting, because it begins to opens our minds to wonderful change that is possible. We can create moments, activities, programs, schools, and societies where no one is disabled.
Are you referring to my post there, Emma?
Emma – Thanks so much. I have felt excited by this notion, so I completely related to this comment.
Great point, Emma. I think that is what I meant: in the “right” place, we aren’t disabled, really. That is Ariane’s job with Emma- to try to make all places “right” for Emma. Society can disable even the strongest people unless you are vigilant about making sure you are surrounded by the “right” people, experiences and things.
Reblogged this on catherinephung.
I think this might help you get some idea (this is only a piece of it, of course)
Your father was impaired by pain.
The disability might be things like … he didn’t have enough effective painkillers.
The next question is:
Why didn’t he have enough effective painkillers?
There are attitudinal barriers (things like being assumed to be a junkie)
Sometimes, racism can disable people who would otherwise just be impaired. This can range from ‘doctors don’t know what illnesses look like in dark-skinned people because all the examples in the textbook and case stuidies are white’ to ‘diseases that are more common in white people get more funding than diseases that are more common in black people, regardless of actual levels of pain/imparment’
There are also physical barriers (like, the place you get painkillers from has steps, for a wheelchair user.
And sometimes, there can be both. Like…say, the doctor always refers people to pain clinics for stronger painkillers and insists on doing this?. If the pain clinic has steps…..now what?
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