This is the speech I gave on December 4, 2021 as the Guest Speaker at the AEBC International Day for Persons with Disabilities Conference 2021.
AMI-audio broadcast this conference live, and the podcast recording of this speech is available here.
My name is Maddy Dever, and I am Autistic. I am non-binary and use they/them pronouns. I am a parent of 5 kids, 4 of whom are also Autistic. I am diabetic. I am a wheelchair user due to a spinal cord injury. I am white with long brown hair. I wear glasses. I am sitting in a wide brown chair. I am a Sens hockey fan. (sorry about that Leaf fans). I am Canadian. All of these describe parts of my identity, and make up who I am.
All of these words identify me in positive or neutral ways. There are many other words that could describe those same aspects in negative ways, focussing on that which I can’t do. However, I choose instead to live my life and describe myself and others in a strengths based way.
What I want to share with you today…
Today in the short time I have with you, I hope to share with you a bit about my journey as an Autistic, a parent and an advocate. I am going to talk to you about the models of disability and how they can affect the language we use. I will share with you the importance of acceptance, of accommodations and inclusion.
Feel free to ask questions in the chat, and at the end of my talk, I will begin to answer as many questions as I have time for, and I will also share how to reach me.
My journey as an Autistic, parent and advocate
I started out this journey when my first child was diagnosed with autism. It was not something I was too much aware of 20 years ago, but I knew that it was something that absolutely frightened my mom. However my journey as a parent of an Autistic child started out a lot different than many parents upon hearing a diagnosis.
For me I felt it was the greatest day ever, because I had a name that described my son, that put into context why he didn’t talk much, why he didn’t seek play with others amongst many other things. I remember going on a train ride for a business trip, shortly after his diagnosis,, and searching the internet, devouring everything I could, now that I had a label to look for.
Autism has never scared me. Long before I myself was diagnosed, I could never see autism, or even Autistic traits as something to be afraid of or ashamed of. I’ve spent much of these last 20 years working to share that understanding of autism with educators, other parents as well as with politicians and policy makers.
Since that day 20 years ago, I have had a total of 5 children. And with each child began a new journey of neurodivergence. 4 of my children are Autistic, and 1 has been diagnosed with ADHD. They are all different, yet all so similar. They have many strengths and many challenges. They are all over the autism spectrum….
In the midst of this, I was diagnosed as well. I was on my own journey to understand the challenges and difficulties that I faced in both my childhood and my adult life. So many of the struggles I was seeing in my children were reminding me of the very very similar struggles I faced at their age.
When I began my advocacy journey, most of it was aimed at making the lives of my children better. My 4 Autistic kids, each have their own strengths and challenges and needs that require support in different ways.
Advocating in our school system was and still is a daily challenge, but this type of advocacy leads only to small successes and so much stress. I began to see more systemic issues that needed to be addressed. Not just for my own kids, but for all Autistic kids and their families. So then my advocacy began to expand to advocating at the school board level and eventually to provincial politicians.
The last three years have seen me thrust thoroughly into autism advocacy with the changes to the Ontario autism funding model in 2019. I was invited to be a member of the Ontario Autism Program Advisory Panel in the summer of 2019. I continued this advocacy work as a member of the Ontario Autism Program Implementation Working Group for the last 2 years, which we are just finishing up this month.
I realized several years ago that if we want to change the way we work with Autistic people, we also need to change our own attitudes. And I see the best way at changing attitudes is by changing our own vocabulary regarding autism, Autistics, and disabilities in general. I’ve been able to branch out and use my new networks and connections to speak and educate parents, professionals and researchers especially on how to change the language we use to speak about autism and disability.
And here we are today.
What is the medical model of disability (deficits)
Deficit. Disorder. Dysfunction. Intervention. Fix. Broken. Cure.
These are the words that exemplify so much of what is wrong with the medical model of disability. Most of those trained in the medical and health professions have been schooled and steeped in these terms and many others.
The medical model of disability defines disability as being caused by one’s own brokeneness. There is illness or disorder causing us not to function in a typical way. In order to address our disability, we need to be treated, intervention is necessary and cures must be sought in hopes that the patient will have become “normal” or “fixed”.
The focus is all on fixing us, and we are defined by our limitations and our not being “normal”.
Many of the terms used to describe autism and other disabilities focuses on what we can’t do, and emphasizes that parents need to get therapies that can intervene and fix their child.
The assumptions made about us, and all of the hurtful damaging language that gets used with and about us, all are based on the premise that we are the problem, that we are damaged, that we need something done to us to make us normal and “healthy”.
There must be a better way.
What is the social model of disability (barriers)
Disability rights activists have for decades complained that this concept of disability did not match their own experiences, and were greatly concerned about how negative it made others feel about them, and how they perceived themselves.
They felt that it was the world around them, and the barriers (both visible and invisible) that were disabling them. This brought about the concept of a social model of disability.
In this model, instead of needing to fix or heal the condition a person has, you instead find accommodations to allow a person to live a full life. Instead of focusing on what’s wrong with the person, you look at the barriers both physical and systemic and work to remove those barriers.
So many of the barriers we face are attitudes, norms, and unspoken expectations. When we address these, so many things become easier, and we have a better view and acceptance of our own value and worth. Our worth isn’t based on what we can contribute to society, but rather we are worthy because we exist. We need to hear this. Know this. Accept this.
This concept of removing systemic barriers is a key concept that ableism shares with all the other “isms”. What is ableism? Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities and abled-bodies are superior.
We need to root out ableism, and tear down these barriers.
What is a strengths-based approach to life?
I said earlier that I live my life in a strengths based way. But what do I mean by that?
A strengths-based approach focuses on the innate strengths that we have, the things we can do, and do well. It doesn’t ignore the challenges, but it acknowledges them, looks for supports for them. But on the whole we look at ourselves in a positive or neutral light.
This isn’t always easy, especially for me this past year. In June 2020 I was in a catastrophic car accident where I was hit from behind while stopped at a light. My spinal cord was damaged amongst many other injuries, and I ended up having emergency spinal cord surgery on my neck. I’m now in a wheelchair and lost most of the use of my left hand, and part of my right. Things I used to do, I cannot do any longer.
In the past, having all these disabilities, experiencing all the things I lost would overwhelm me, but I have focussed on all the things I still CAN do. I can still think clearly. I can still talk and share my thoughts. I can still write, even as challenging as that can be now.
Not every day is easy to do that. But, part of what helps me is that I have chosen to use language to describe my disabilities in strength based ways.
How do we apply strengths-based approach to autism and disability language?
Autism and Autistics have been historically seen in a negative light. Autism being seen as a “disorder” is at the root of the problem.
We need to change the words and phrases that come from the very deficit focussed medical model of disability.
For example, instead of symptoms, let’s use characteristics or traits. Instead of “deficit”, let’s use “challenge”. Instead of severe let’s use extensive. Let’s stop talking about “comorbid” conditions and call them ‘co-occurring or co-existing” conditions.
Autism isn’t something to be feared of, so let’s stop talking to parents about the “red flags” or risks of autism, and instead talk about possible or early signs of autism.
Please, please please don’t say we are ”suffering from” or “affected by” autism.
We need to go even further to look at our language and the words we speak when it comes to ableist idioms and insults that have been in common use since our childhood.
Terms like “lame”, and “blinded by” all have been used because being disabled has been seen to be a “deficiency”, something to be “pitied”, something to be “fearful of”. Being able-bodied is “superior”, and this system of thought all begins with the words we choose to use.
We need to practice different things, and stop trying to “other” people. We see this with racism, sexism & misogyny, homophobia, transphobia. With fatphobia. We need to be intentional with what we say. When we do that, it is harder to treat others as “worse”, or “different”.
Let’s talk again about identity – Identity First Language
One of the areas that we get caught up in our language is in how we talk when referring to us. Over the last 20 years there has been a concerted effort in the medical and parent communities to use person-first language when discussing us. For some reason, there needed to be an effort to see us as separate from our disability. “Person with disability”. “Person with autism”. “Person in a wheelchair”. When it comes to those disabilities which have more negative stigma, parents can be even more fond of its use. “Autism doesn’t have my kid, my kid has autism”.
But we use identity language all the time. Especially when it comes to things that are positive in our lives. Like I introduced myself at the beginning.
“I am Canadian. I am a parent. I am a child. I am right-handed. I am white. I am gifted. I am a Sens fan. (again, sorry Leaf and Habs fans). If I used Person-first language to describe these parts of me, it sounds like this: “
“I have Canadianness. I have offspring. I have parents. I have right-handedness. I have whiteness. I have giftedness. I have a fan interest in the Sens. None of this sounds right, it doesn’t feel comfortable describing myself this way. Even my grammar checker had a hard time with this!
I want to draw attention to one thing I said. I said I am gifted. Not that I have giftedness. We overwhelmingly use identity-first language to describe positive traits. The issue isn’t that we need to center the person and not the disability. The issue is that we are seeing disability as a significantly negative thing.
The vast majority of Autistics, and many other members of other disability communities prefer identity-first language. I am Autistic. However, it’s not universal, and each community and each person gets to decide how they identify.
A good rule of thumb though, is that when it comes to talking about a person, talk about them, consider using identity first language and always ask. If you are uncomfortable saying “is Autistic”, then use the diagnosis neutrally, by saying “on the autism spectrum” or “is diagnosed with autism”
Remember, autism, Autistic, disability and disabled are not bad words, and they should be said openly and comfortably!
Let’s talk about “Levels of Functioning” – Let’s get rid of concepts of high and low.
When it comes to autism, not only do we have to deal with the stigma of being Autistic to start with, but we also have to deal with the concept of “levels of functioning” – “high functioning” and “low functioning”.
Until a few years ago, there were several different diagnoses for autism. Aspergers, pervasive developmental disability and classic autism. They were all brought together and called autism. Autism Spectrum “Disorder”.
Merging all the similar diagnoses together under one umbrella “autism” was a controversial, but good thing. But what do medical folks do with good things? They muck it up by having “levels of functioning” “level 1, 2, 3”, like we are some characters in a video game. I’d love to level up my autism! A few special interests here, piercing anxiety here, oh and lets throw a sensory meltdown for good measure… you’ve levelled up! What does that get you? More stigma..
The problem is how an Autistic can “function” one day in one area may be very different the next day, the next month, the next year.
“Functioning” describes our perceived capabilities at one moment in time. Strengths that we may have in one area may mask significant gaps or challenges in other areas.
Change can quickly make someone appear “low functioning” who has been previously deemed “High Functioning” and executive functioning is usually the first domain to see a drop in our capacity.
I’ve experienced this personally quite a bit this past year. When I am in a lot of pain, my ability to speak diminishes significantly. My ability to focus and get my thoughts out gets much harder, and impatient medical professionals make me very stressed. I don’t appear capable. I can’t communicate at the rate they expect me to, and I then appear very “low functioning”. It’s frustrating and demeaning and demoralizing, because there are still areas I can “function” with, my strengths in other areas are still higher.
We need to change how we see the Autism spectrum. It is not a linear spectrum where we are either “more Autistic” or “less Autistic”. It is more like the spectrum of a colour wheel, where we see all the domains like language, motor skills, executive functioning and others along the sides, and we have relative strengths or challenges in each area, and that can change from day to day, month to month, year to year, and change when there are different stresses or events in our life.
The problem with functioning labels is that there is an increased expectation of those who are “high functioning” to have strengths in all areas, while those who are considered “low functioning” have lowered expectations and their strengths can be missed altogether.
Functioning labels are ableist – they don’t help the Autistic in any way, but continue the stigma towards certain Autistics, and faulty expectations towards others.
“At least my kid is “high functioning” This language harms us and needs to stop.
What is most important is not the label, but our needs.
Let’s talk about Acceptance & Inclusion – Needs and Accommodations
As we work on changing our language, what we are really doing is moving our world towards acceptance. To a world that accepts us, for who we are – as we are.
However, Our ultimate goal is inclusion. But our society has a misconception or misunderstanding as to what “inclusion” means. Many educators in our school system talk about having inclusion in our schools. What they really mean is that we have an integrated school system. With integration we are all in the school together, but unless our needs are accommodated, we are potentially on a path to exclusions and segregation.
When everyone’s needs are accommodated, only then do we have inclusion. In our school system we tend to have accomodations and inclusion as “goals” and hopes. We need to radically change things so that we START with inclusion and assume we can accommodate. Everyone wins when we accommodate everyone.
It shouldn’t just be in schools where we think inclusion first. In the community. In programs, in social services, in customer service, we need to look at the world around us and see where the barriers are, and look at how we can remove them.
In conclusion. Where can people get more information?
It has been my honour to be able to speak with you today, and share my insights into language and moving things forward towards a world of acceptance and a path to inclusion.
As a society, we need to actively tear down barriers and accommodate everyone’s unique needs and not their labels. As we celebrate International Day of Persons with Disabilities today, and in fact, every other day of the year, let’s celebrate our differences and our diversity.
Words can change thoughts. Thoughts change hearts. Hearts change actions. And actions can change the world.
For more information, you can check out my website at autisticrambler.com or find me on twitter @mattjdever