When I Picture Myself Being Included, I Don’t See Myself Without My Disabilities

I want to live in a world where my existence is just accepted. I don’t want to have to undergo drastic physical or neurological changes to be perceived as a normal part the world. When I imagine myself in an inclusive and accepting world, I see myself as me unchanged, still disabled but simply in a world where that does not matter.

And yet this is not what people think I should see. This is evidenced by this video, produced for World Down Syndrome Day

In the video, a narrator talks about her life aspirations and goals while the actor Olivia Wilde lives them out. The implication is that the narrator cannot do those things for some reason. That reason is revealed at the end to be because she has Down Syndrome (DS). The narrator concludes with “This is how I see myself, how do you see me?”

The intent of the video is to convey that people with DS should be able to do all of the things talked about in the video. Unfortunately the way that message is delivered is deeply misguided.

It frames the narrator as wanting not only to be accepted and to have opportunities but seeing herself achieving them without Down Syndrome. It looks a lot less like the intended “I want to have what you have” and more like “I need to be fundamentally different to achieve acceptance and opportunity”.

It suggests (though the producers object) that people with DS should want to be Olivia Wilde rather than themselves. From a larger standpoint it says that disabled people generally should see themselves as not being disabled.

It is unfortunate that the producers of this video felt that it would be more effective to have a nondisabled celebrity play out the life and dreams of someone with DS. Besides completely missing the mark on their stated intentions, the people who produced this video lost the opportunity to model how acceptance and inclusion can look.


The use of Olivia Wilde completely undercuts not only the need for disabled people to have opportunities and acceptance because no one questions a beautiful celebrity being able to do those things. People do however regularly question not only whether disable people can do something but whether they should be allowed to.

Sure the nondisabled viewer may finish watching that video and think “of course people with DS should be able to do all those things” but the sentiment isn’t likely to lead to action because without a clear guide what passes for acceptance and opportunity will be defined by nondisabled people. I promise you it will not look like the images of Olivia Wilde with someone with DS swapped in.

It’s interesting that this video came out around the same time as the short film “Guest Room” starring Lauren Potter did.

<p><a href=”https://vimeo.com/120125960″>Guest Room</a> from <a href=”https://vimeo.com/joshuatate”>Joshua Tate</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

This film clearly illustrates why relying on giving nondisabled viewers “the feels” is not going to be effective because it shows so clearly how the reality of people with DS makes nondisabled people uncomfortable. Not just people like the woman in the hair salon who utters “you’re so good with her” but the people closest to the protagonist and her boyfriend. His parents are really uncomfortable with the idea of the two of them becoming parents. Particularly if the baby also ends up having DS (for more on why “Guest Room” is amazing click here).

Charities and nondisabled advocates have been exploiting people’s immediate gut reactions for decades. It is really easy to get people to think “of course the narrator should be accepted”. It is a far harder thing to actually get them to actual acceptance.

This is why it is so important to actively confront the real discomfort that society has with the reality of the full participation of disabled people in all aspects of life, as “Guest Room” does brilliantly. It is also equally important to model and show disabled people participating and being accepted.

When we dream about a better more inclusive reality, we shouldn’t show the status quo and suggest that people who don’t usually fit in should have that too. We should show a world where they actually do.

Or is that really too hard for you to imagine?







The scene:













Would you like to see more disabled people on TV?


Would you like disability allowances to provide more than enforced poverty?

Would you like public spaces to be more accessible?







Proof that “Positive” Euphemisms for Disability Just Don’t Work


Does it work?








When Your Disability isn’t Considered in Grade School

I have hemiplegic cerebral palsy and am on the autism spectrum. I wasn’t diagnosed with the latter until I was eighteen and had already graduated high school. In some ways the total lack of knowledge my parents had about cerebral palsy contributed to this lack of diagnosis. My extreme sensitivity to touch and textures was attributed to my CP. My behavioural issues were never linked to my hyper-sensory issues and as such was generally considered to be poorly behaved and to have issues with anger management.

So though my autism absolutely affected my grade school experience, it was not something my parents or teachers were aware of. So for the purposes of this post, I am going to focus mainly on how having CP affected my experience of government mandated education.

Doctors would often describe my cerebral palsy as mild. As far as I can tell that mostly just boils down to the fact that I can walk without the assistance of a cane or walker and can climb a flight of stairs.

Having a disability that has been labeled as mild by the medical establishment also seems to have the added pressure of being considered “not disabled enough” to need accommodations.

When disability and education are discussed it usually follows one of two streams.

Inclusive education: where disabled and nondisabled students are taught together with added supports for the disabled students.

Or Segregation: where disabled students are taught separately from their nondisabled peers.

Each group has their pros and cons and supporters or detractors.

In my case neither of these scenarios was even considered. I was just dropped into a school that had no supports for disabled students. I was one of only two students in the school with a disability. The other was in the English stream whereas I was in French immersion, so while we were aware of the other, we had little contact with one another. We might as well have been attending different schools.

Because my disability wasn’t really considered to be something that required consideration or accommodation, it was never discussed that I might face physical barriers to access the school or activities. As such when I encountered them it never occurred to me that I could or should complain or demand access. I was already being viciously bullied by the other students and was keenly aware that if I mentioned my difficulties, I would just be further separating myself from my classmates.

As I have mentioned in a previous post, one of the issues I encountered at this school was an inability to use the sinks in the school bathroom. This being the early 1990s, those motion sensor taps hadn’t been invented yet so in order to conserve water, the school installed sinks that had rounded knobs that stopped the flow of water as soon as you let go of them. I did not have the hand dexterity or strength to use those taps. It never even occurred to me that I should complain. I thought that the inaccessibility was normal and acceptable.

Other than that in those early years my difficulties came up when scissors or tracing were involved. I could not hold objects still with my weaker limb in order to trace a object or cut it with my dominant hand. I had a lot of particularly sloppy looking art projects as a child.

Gym class was generally awful at both my elementary schools but there was a situation at this first school that was particularly bad and occurred because my disability was never considered and I was expected to just be abe to do everything that my able-bodied peers could.

It happened in grade 5 which was also the year I insisted on transferring schools. The teacher had planned an alternate gym activity. We were going to ski in the playground.

All the other children put on their skis and immediately began racing down the low hill that the school was built on. I on the other hand found that as soon as I put on the skis (which were poorly sized to my small frame) that I was immobile. My left leg was to weak to get me moving. I quickly fell down. I decided the best course of action was to just stay still until the class was over. Unfortunately the teacher noticed my nonparticipation and demanded to know why.

I explained that I wasn’t able to ski but assured her I was fine and didn’t mind. She however concluded that if I couldn’t ski than no one could. Against my pleading, she recalled my classmates told them the fun was over and even pointed to me as the cause.

My peers spent the rest of the day making it very clear that they were less than impressed that I had ruined their fun.

I could have easily just played outdoors without skis, there were several sleds at school as sliding down the hill in Winter was a common recess pass time but instead, I was made the scapegoat for my teacher’s lack of imagination or consideration.

Unfortunately my move to a new school later that year did nothing to improve my situation as I became the only disabled student in the entire school, a trend that continued into high school.

While in high school, I continued to have the expected issues in gym class, where my lack of athletic ability was further highlighted because my school had added a points system to the curriculum. Our performance was publicly displayed on a chart where I was placed dead last by a wide margin. These placements were supposed to be anonymous but were most definitely anything but. The comparison was supposed to incite competition but was really more of a ranking system.

High school gym was where I first really advocated for myself but it did not come from a new found sense of entitlement to access and inclusion. It came from a real fear that if I participated in the outdoor rollerblading class that I would risk real and serious injury. I had to spend the entire class sitting in the change room while I waited for the others to return.

The class that actually had some of the worst access in high school was actually Grade 9 & 10 Science. My social isolation followed me from elementary to high school and when it came time to find a partner in science class, I was frozen out. There was an odd number of students so I was left out. I tried to find a pair who would let me work with them but was repeatedly refused. I asked the teacher to assign me to a pair but he felt that it was not his responsibility. I was thus forced to work alone. I had to try to complete experiments that had been designed for two able-bodied people alone and with only one fully functioning hand.

This continued with me underperforming my experiments until due to my lack of dexterity I burned myself with hydrochloric acid. It would have continued beyond that because my teacher remained unmoved by my obvious disadvantage but finally a pair in the class took pity on me and allowed me to work with them.

My troubles in science class weren’t over though. When we started doing experiments where our findings had to be written in charts that we had to draw by hand with a ruler to our teachers precise specifications. As I have mentioned, I don’t trace well, I can’t hold a ruler steady so my charts looked sloppy and I began to lose marks for presentation even if my findings were correct.

I explained the reason for my difficulties and asked if I could make the charts on the computer in advance and fill in printed sheets by hand. I was refused.

My request in no way threatened the academic integrity of the experiment and would have stopped me losing marks for something other than a wrong answer but I was refused and that refusal did not come with a justification.

I never complained to the school, I don’t even think I mentioned it to my parents at the time. It never occurred to me that that complaining was an option. I didn’t know I had the legal right to accommodation.

The reason I did not know this was because I had been completely isolated from other disabled people and to the adults around me this was seen as a good thing.

In an ableist society, a disabled person’s value is determined by how little effect their presence has on the nondisabled people around them. This creates a hierarchy of disability that is often internalized inside the disability community. The fewer accommodations you need or reject using despite need means you have more value. You are less of a burden.

The more obvious your disability or the more you are seen as part of the larger group of disabled peopled, the less value you have. This is a systemic problem and often leads to disabled people comparing themselves to others and finding the others wanting.

People brag about the accommodations they don’t use. This reinforces the idea that needing and accepting accommodations makes you lesser.

I categorically reject this idea because I have experienced the harm and marginalization that is the result of being denied the help I need to succeed.

My experience has also made me acutely aware of the harm that total isolation from disabled peers can cause. I never knew any better and that ignorance did not mitigate the harm I experienced through lack of physical or social access. Perhaps if I had been aware of other disabled children, I might have known to fight back against those instances of oppression where changes could be made.

In my isolation, I never knew that change was even possible.















