Sorry for the lapse in posts! Summer has me running all over with my kids, which has hindered my blogging and called halt to production of my second book, Grayscale. Basically I’ve been experiencing child-induced writer’s block: Every time I try to write my kids block me! It’s ok, they’re young for such a short time, so I’m taking full advantage of them actually wanting to be seen with me!
Over the past couple weeks I have been communicating with a fellow-writer, Gregg Beratan, about disabilities. If you do not follow Gregg on Twitter, @GreggBeratan I highly recommend it. He is a wealth of knowledge regarding disabilities and, alongside writing and research, shares information daily from news sources in the U.S. and around the world.
So, I was telling Gregg I couldn’t think of a thing to write about and he off-handedly suggested writing about how I came to identify with my disability. Hmm… I’d never actually thought about that.
Thank you Dr. Beratan!
[NOTE: This post addresses both the Medical and Social Models of Disability. Please keep in mind, as always, I will be writing from my personal experience and through my observations. I do not claim to speak for all people with disabilities so what I write is how I feel and how I view things.]
Let’s Get Started
I would like you to accompany me on a journey today, a journey of discovery. One which begins with me telling you that I do not have disabilities.
(Stay with me, this will all make sense soon enough).
So, in true Renée form, let’s start by taking a look at disability through the Medical Model of Disability. The following description is from Disabled World.
Medical Model of Disability
“The medical model is presented as viewing disability as a problem of the person, directly caused by disease, trauma, or other health condition which therefore requires sustained medical care provided in the form of individual treatment by professionals. In the medical model, management of the disability is aimed at a “cure,” or the individual’s adjustment and behavioral change that would lead to an “almost-cure” or effective cure. In the medical model, medical care is viewed as the main issue, and at the political level, the principal response is that of modifying or reforming healthcare policy.” - disabled-world.com
Upon reading the Medical Model of Disability as stated above, and really studying the words and their meaning, I am clearly not disabled. For the very simple reason that I do not have a problem with being autistic. (And for the record: I also do not have a problem with my children being autistic; dyslexic; etc…) I have not experienced disease, trauma or other health conditions that require sustained medical or individual treatment. I do not need to be cured nor do I require adjustment or behavioral change (same goes for my kids). When I break it down like that, clearly
I do not have a disability
But Let’s Backtrack Just A Moment
My entire life, up until about the last year or so, my knowledge of disabilities was scant or, more specifically, nonexistent. To me a disability was apparent by sight: A person who uses a wheelchair, or is blind, or deaf, or cannot speak… These things told me right of the bat that the person in question was disabled – e.g. unable to do the things I could do: walk, see, hear, talk. My brain needs black and white, hard and fast rules to make sense of things. She’s autistic you know, and needs to categorize, compartmentalize, list and label everything she comes across to make sense of the world. It is important for me to impress upon you that I cannot see ‘outside the box’ and even more important …
I only see and understand things from my perspective.
Growing up as I did…
- in schools where there were few kids with disabilities who were in special education classrooms separated from general education classrooms
- never getting to be with or learn from others with disabilities
- being told in hushed tones and whispers that a person was ‘handicapped, mentally retarded, crippled’ (without explanation as to what the terms meant, why they were whispered, and why it was impolite to ask) made disability scary; something to fear
- knowing nothing of the history of disabilities
- not knowing that there were such things as Medical and Social Models of Disability
- having no knowledge of Invisible Disabilities
…made the idea of disability a foreign, alien subject that had nothing to do with me even though I had family members with disabilities (because we didn’t talk about ‘those things’). I had little knowledge and practically no exposure to disabilities and I talked about that here - if it wasn’t a physical disability that I could see with my own two eyes, then a person wasn’t disabled.
…About 30-odd years to the present. Would I say that my knowledge of disabilities has changed?
Would I say that my understanding of the Medical Model of Disability and therefore my perceptions of people with disabilities has changed?
About 5 years ago, my son was diagnosed with autism… And then I was diagnosed with it… And then my oldest daughter was… And then my youngest daughter was diagnosed with a visual processing disorder. Did we all have disabilities? My answer back then…
Of course not! Because we didn’t fit my severely limited knowledge of what I had learned disabled meant!
My answer now…
Yes. We all 4 have disabilities.
(But I don’t understand? I thought you said you weren’t disabled?!)
My Eyes Were Opened…
… and then my heart, and my mind. I talk about it a lot, but my acceptance into the Virginia Board for People with Disabilities (VBPD), Partners in Policymaking (PIP) program was one of my most life-altering experiences, and it was truly an honor to participate. My education on the history of disabilities by people with disabilities eradicated 39 years of ignorance on my part. Ignorance. Pure and simple. There’s no other way to explain it. I was ignorant about disabled people and to what disabilities truly are. And that, my friends, is why I did not know that…
my kids and I had disabilities.
And during that year-long program, something occurred that strengthened and supported all I was learning from PIP, and that was joining social media and connecting with even more people with disabilities. I could not begin to list all the amazing things I have learned or fabulous stories that have been so graciously shared with me, so here are a few things I have learned that I thought might interest you…
Through PIP and social media, I have connected with people who have disabilities and are:
- Public Speakers
- Non-speaking yet successfully communicating in various ways
- Blind and navigating the world
- Deaf and rocking social media
- In wheel chairs and giving ‘em hell at the Capitol - you guys know who you are
- In college
- Writers, Bloggers, Published Authors
- Artists, Photographers, Illustrators
- Musicians, Singers, Composers
- Software Engineers, Programmers
- Doctors, Scientists, PhDs
- Teachers, Professors
- Independent of supports
- Dependent on carers and supports yet, through self-determination, calling the shots!
- Single and Dating
- Business Owners
- Capable and Successful
Pretty cool, but why the list you ask? Is it because ALL people with disabilities are doing these things?
I made the list above because it is a list of things that would have surprised me had I read it a year or two ago.
Through PIP and social media, I have many new friends. Friends with cerebral palsy, using wheel chairs and in need of assistive technology to communicate; Friends with physical disabilities in need of carers for daily living; Friends that are Autistic adults and non-speaking; Friends that have intellectual and developmental disabilities; Friends that are blind; Friends that are deaf; Friends that have extensive medical needs…
And they work.
And they volunteer.
And they advocate.
And, from life experience, they educate.
My new friends are the people that, with much kindness and patience, taught me that disability is not a bad word to be whispered. And it’s not something we turn away from and pretend we don’t see. Think back to when you were a young child, admonished harshly for staring at a disabled person. Maybe it embarrassed you? Even scared you, perhaps? Probably made you never want to look at another disabled person again for fear of being thought rude, bad, disrespectful! But I’d like to interject here and say that’s not the case. Young children are not these things - young children are curious. They want to know about things that make people the way they are. While you think on that, I want to share with one of the most obvious and enlightening ideas I’ve ever heard:
Disability is a natural part of life.
Hearing those words made so much sense and the whole idea was so very easy for me to accept. I know that some will read that and not believe, but it’s true. When my autistic brain hears something logical and borne of common sense, it latches on immediately. You see, I accepted this new idea easily because I know it’s true. Because my children and I live it every day and have been living it every day since birth - we just didn’t know it. I want to think that is about as natural as you can get
Growing up (think of old tv commercials) and even today, think of the organizations that portray people with disabilities as:
- less than non-disabled people
These were even more reasons I could not see myself or my children as disabled.
If you are non-disabled, ask yourself these questions…
Am I a victim? Am I tragic? Am I unsuccessful, incapable, pitiable? If you are non-disabled you probably don’t think of yourself in these ways (fyi… I’m disabled and I don’t). But for just a moment, reflect on the list above and consider how these questions might make you feel. Would it surprise you to be thought of in these ways? Would it embarrass you? Anger you perhaps?
Would it make you feel that others saw you as less than them?
Accepting My Identity As A Person With Disabilities
Because of my prior knowledge of disabilities, or lack thereof as it were, I was pissed the first time I was told my son was disabled! I denied it. Not because I didn’t believe his diagnoses (and there were many) but because I’d known my son from birth. He wasn’t disabled! Sure he’s Autistic, non-speaking, has fine/gross motor issues, sensory integration issues, auditory processing issues, and more… but those things didn’t make him disabled! They’re a part of him. He’s not to be pitied! He’s not incapable! And he’s sure as hell not less than others! So he needs assistive technology to communicate, and he needs additional aid in learning. I get that. But there’s nothing wrong with him. He’s just…
The first time I was told that I was Autistic, that I had a disability, I was floored. Not at the autism diagnosis - I knew that already - but that I was considered disabled because of it. When I was told I was ‘high-functioning’ I pursed my brow in confusion and was slightly peeved at the designation. When I learned that because I had: sensory integration issues, auditory processing issues, prosopagnosia, hyperlexia, hypoglycemia, IBS, difficulty following verbal or written direction, etc… I was considered disabled, I was affronted. I wasn’t a victim! I wasn’t tragic! I was just …
And when my oldest daughter was diagnosed with autism and had sensory integration issues, auditory processing issues, difficulty following conversations, understanding social cues, discerning body language and hyperlexia, I still couldn’t fathom the idea that she was disabled! She’s really smart, does well in school. That doesn’t describe an incapable, unsuccessful person! Sure she may need separate instruction in school because she can’t always follow traditional methods, but we all need accommodations. Can’t you see, she’s just like my son. Just like me. She’s just…
(At this point can you think of anyone more in need of the PIP program than me)?!!
Finally, my youngest was diagnosed with a visual processing disorder and issues with sensory integration, dyslexia, mirror reading/writing (basically seeing everything backwards and upside down) greatly impacting reading, math, language and every other aspect of learning… but these things didn’t make her damaged! Unsuccessful! She just needs additional supports. Alternative teaching methods. She was just, you know…
My kids and I, all four of us, were just… different. There was nothing wrong with us. What was all this disability stuff about anyway? We weren’t looking for sympathy! We’re not looking to be fixed or cured, because we are not sick or damaged! And we’re happy just the way we are. We love ourselves ‘as is’ thank you. So we need different accommodations to be successful. What’s the big deal? Was this suppose to be some sort of joke?!
(No, love, it was the truth).
The only ‘joke’ was my view of disabilities and what I thought being disabled meant.
Ignorant did not begin to encompass how I felt about myself when I understood and accepted all I had learned. I felt foolish, stupid, naive… ashamed. Since childhood I had conformed, and without hesitation, accepted the majority view of disability. I made it well into adulthood and never questioned the Medical Model of Disability with it’s antiquated, cold and demeaning views of people with disabilities. I suppose I never questioned it because I didn’t know anyone with disabilities??
I didn’t question it because the people I did know with disabilities didn’t seem to fit what I had come to know as the Medical Model, which teaches us that people with disabilities are the problem. And these problems need to be fixed.
Wait a minute! Ugh… this is sooo confusing!
None of the disabled people I met were anything like what I had previously learned about disabilities! They weren’t tragic. They didn’t consider themselves victims. They were some of the most capable people I had met. They weren’t looking for pity and I’d dare anyone to call them ‘less.’
I had been so very wrong. People that I had previously considered as just different, because the negative stigma attached to the term ‘disability’ didn’t fit, were in fact people with disabilities. Just like me. Just like my kids.
I, with much gratitude for all those who schooled me on disabilities, no longer adhere to the Medical Model of Disability.
And A Door Is Opened
Through my children, PIP and my new-found friends, I learned a different definition of disability. One that did not make me feel afraid. Or sad. Or angry. Or less. It made concrete the idea that disability is a natural part of life. That it’s not about something being wrong with me or my kids, or any of us needing to be fixed or cured. But the idea that the environment and everything in it must be inclusive and made accessible to everyone. My thinking had been backwards:
Wheel chairs don’t make people disabled, they make them mobile!
And that new idea (new to me that is) was the Social Model of Disability. The text below is again, from Disabled World.
Social Model of Disability
“The social model of disability sees the issue of “disability” as a socially created problem and a matter of the full integration of individuals into society. In this model, disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment. Hence, the management of the problem requires social action and is the collective responsibility of society at large to make the environmental modifications necessary for the full participation of people with disabilities in all areas of social life. The issue is both cultural and ideological, requiring individual, community, and large-scale social change. From this perspective, equal access for someone with an impairment/disability is a human rights issue of major concern.” – disabled-world.com
So what did I learn from PIP? From my disabled friends? And from my understanding of the Social Model of Disability?
I have disabilities.
Now, let me say that a little differently:
I am a child, sibling, friend, college graduate, wife, mother, advocate, published author, writer, blogger and public speaker with disabilites.
I and my three children are disabled. We have obstacles and challenges - much more than some and way less than others - just like any other human being. No one is perfect. But with the right supports and accommodations in place and by presuming competence, and through education, inclusion, accessibility and more, society’s misinformed perceptions along with our environments will no longer disable us.
Change the environment NOT the person.