The Uncomfortable Truth

By María Sifone

So here’s a question for you: what do you think of when you hear the word disabilities. Is it perhaps someone on a wheelchair? Is it a person who needs to speak with their hands instead of their voice? The truth is that it is a bit more complicated than that. I am interested in this issue because my younger sister, Regina, is someone with a disability. Regina has a diagnosis of Rett Syndrome, which is a genetic neurological disorder, and it affects my sister’s ability to speak, walk, eat, or to use her hands.

I grew up in an environment where having a disability is completely normal and part of everyday life, but I am aware that this is not true for most people in society. I have experienced people’s negative reactions towards my sister my whole life, and I have always wondered why it was such a strange thing for them… so much so that sometimes people would just stand there…and just stare at my sister. And I would wonder what are you staring at? What is it about my sister that is making you stare at her like she is not just another person?

And so I think there is still stigma attached to disabilities, and people like my sister make others uncomfortable, and why is that? And what can we do about it? Welcome to A Place for Passion. My name is Maria Sifone and on today’s episode “The Uncomfortable Truth” I will be talking about integration of children with disabilities into society.

<Intro music>

So one day I was looking for organizations I could volunteer in and hopefully gain some “Canadian experience”, since I am not Canadian. Because my mom is so involved in the community of disabled children, she came across Centennial Infant and Child Centre through an online forum. Turns out they have a Preschool program that works with volunteers, so I became part of their team. I found that program interesting because I could see not only disabled children, but typically developing children as well, all playing and learning together, getting along well and I thought “I need to see more of this in society”.

To learn more about the program, I spoke with Kim Clarke, the General Manager at Centennial. “So our preschool program is for children… but the reality is we’re an early intervention program, so the parents are sending their children here to support them to be the best they can be”. They have approximately 80% children with some identified need, and about 20% of Typically Developing children that can offer peer support and modeling. “So on the milder end it might be just a child who has an articulation issue with their speech…doing fine, or monitoring a child who is premature but just a little bit behind, to… umm… the more complex needs. So that’s quite a diverse group”.

From a “milder end” of articulation issues, to “the more complex needs”, it is really important to acknowledge that there are different kinds of disabilities. A Canada Statistics Report from 2006 shows that 3.7% of children aged 0 to 14 reportedly had a disability, and these ranged from agility disabilities, hearing, learning, communicating, seeing, developmental delays, psychological disabilities, chronic condition, and more! (Stats Canada 2006). So this shows how complex disabilities are and how they affect people in many different ways.

I think it’s important, however, to recognize the person before their disability, and this is one of Centennial’s values as well. But this may be hard for some people, to recognize someone so different from them as just… another person. I asked Kim if she thought there was still stigma attached to the word disabilities and she says, “I agree… I think a lot of people are uncomfortable using different terminology, they’re not sure how to classify… umm… they’re not so sure what the current sort of lingo is to make sure that they are using the words properly, and no derogatory terms”. But there is still awkwardness that people feel which goes beyond of trying to figure out which words might offend less.

People can feel uncomfortable just by being in presence of someone with a disability. Going back to my personal experience, let me tell you, I would go to the mall with my family and we would be sitting in the food court trying to enjoy our meal just like anyone else, and I could see people stare at my sister, silently and from far away. And it would be things like this that frustrated me a lot whenever we were out in public with Regina.

So there is definitely something going on in our society that causes people to be so perplexed by those who are different. “I think society still has a long way to go with sort of understanding, accepting, and just feeling comfortable” Kim says this is why it is important to have inclusive settings that expose children to disabled peers, since she thinks that uncomfortableness and fear come from lack of positive experience. There is no doubt that inclusiveness is important if we want children to grow up viewing their disabled peers just as peers.

There is a study I read that was aiming to asses whether preschool classrooms in Toronto were diversity-positive environments that states that inclusiveness at the preschool age encourages positive social behavior among children from different backgrounds and supports an “inclusive society that celebrates diversity” (Perlman, Kankesan, & Zhang 764). So inclusive settings are the first step to work on a change of attitudes towards disabilities. But I think it’s important to question at this point the root of the problem: why are people so uncomfortable in the first place?

Kim mentions that she believes that uncomfortableness comes from a lack of experience, so I spoke with someone who has some experience around disabled people through a music therapy program. It is important to note that she is not a family member or friend of someone with special needs, and that she chose to remain anonymous because, well, she feels…  uncomfortable. This person goes once a week to a music therapy program that works with children and adults with disabilities. Although she hasn’t been trained for it, she plays music and does some activities with the people in the program.

She is exposed to people with disabilities, plays with them, helps them, and is around them often… So does she feel uncomfortable around them? “As embarrassing as it is to admit there are times when I do feel uncomfortable,” because she feels that the physical boundaries are too much to handle. She admitted to feel embarrassed and guilty when she could not understand what the other person wanted to communicate to her. And this is the key right here! Communication. Communicating within certain structures, patters, following rules and templates plays a key role in anticipating what the person we are interacting with might do next or what their intentions might be. She says, ‘I don’t know what to expect’, and therefore she is uncomfortable.

This may make more sense to you if we look at Fatik Baran Mandal’s article named “Nonverbal Communication in Humans”. He defines communication as “conveying information through signals” (417), which we perceive with our senses, and are an important link between the sender and receiver of messages. And I find this so interesting! With every interaction we have, we are making decisions of which signals we use, and people will interpret them according to a set of rules to understand what those signals mean.

Now imagine someone who for some reason is unable to communicate these signals, or interpret these signals accordingly in the way we normally do. I read a study made on how children in the preschool age evaluate their disabled and non-disabled peers (Huckstadt & Shutts) which findings suggest that children do not sympathize with norm violations, and that they perceived people with disabilities as more likely to do so, thus leading children to be less interested in their disabled peers. And the fact that the children that participated in this study showed to be less tolerant towards the different accommodations their disabled peers needed, I believe, speaks to the importance of having spaces like Centennial where young children can learn to do things differently.  

But why would you want to do things differently? Let’s look at it from a different point of view. Let’s hear about what life with a disability is, about what living your everyday life doing things differently is like. Michelle O’Reilly is the mother of twin girls named Kate and Charley. These two lovely girls graduated from Centennial’s preschool program, and I had the chance to sit down for a chat with their mom. They found out about Centennial through an Occupational Therapist that was helping them when they first got the girls’ diagnosis. “She recommended it. We went, my husband and I, we went for a visit and we immediately knew we wanted to send the girls there. It was very clear the passion that was there, the passion that we had we could see it in the teachers, and the workers, and Kim”.

In terms of the role Centennial played in their lives, she says it allowed them to enjoy life with the girls more, and it changed the way they dealt with the girls’ therapy, “we were trying to be their therapists, we were trying to be their educators, we were trying to be their social coordinators, and very quickly you realize you cannot do that”. I asked Michelle to describe life alongside someone with a disability in only a few words, “chaotic, um… unpredictable, and… I don’t wanna say difficult cause I don’t really find it difficult, I think that other people find it difficult. But I think… challenging maybe is a better word.

As Michelle said, life alongside disabilities is challenging and unpredictable. Doing things differently becomes the norm for people like her or me. But that doesn’t mean we are still not affected by the stigma and attitudes others have towards disabilities. Sometimes we have to adapt, or make decisions based on this stigma. Michelle mentioned that one of the reasons she did not send her girls to traditional classrooms is that people aren’t comfortable, “and you know especially how the girls present themselves sometimes, with drool, and their heads going to the side… it’s tough for people to see that… see past that”.

In terms of how the stigma affects people around the girls, she says that she noticed people would not ask directly how the girls are doing, and that very few ask directly about the girl’s diagnosis. And why is that? I think people just don’t feel comfortable engaging with what is different. But when you are faced with the challenge of living with someone with special needs you are forced, in a sense, to deal with it. You have no choice but to engage with it. You can’t look away, because it is right there with you every day. And so like you might do with any other challenge in life, you engage with it. This is key when dealing with something like a disability, having the patience to learn about something different without letting it intimidate you.

Although you might be thinking “oh, well, I don’t know anyone with a disability personally, it’s not my challenge or is not my problem to deal with”, maybe step back for a second and think of disabled people not only as children or friends of others, but as citizens that are part of society. People with disabilities, and this is my main point right here, are just people like you and me. They should be taken into consideration as such. They do have different needs than those of us who are lucky enough to be in the “typically developing” side of the spectrum, but it is in our hands to not ignore those needs. When people just stare at my sister from far away they are not engaging with the issue. Also I think it’s important to acknowledge the differences. Even though they are people just like us, they are disabled people who have special needs. But the key to integration is to acknowledge these differences, not to ignore them. Because it is what tends to happen to avoid that uncomfortable feeling.

That was my advice, but of course I asked Michelle what advice she had for people who feel uncomfortable around those with disabilities, and she said that she likes it when people go up to her daughter’s and speak to them, and acknowledge them. “I don’t want to pretend that my girls are the same as everyone else, they are not. Physically they don’t look it, they are in a wheelchair already, so acknowledge that, ask me what’s wrong with them, acknowledge that there’s an issue because then I will feel more comfortable with the conversation I’m going forward”.

And also for people like me, a sister, I admit I too felt uncomfortable going out with my sister when I was younger. She was different, people stared at us all the time, and so I felt different too. I would not want to go out with my sister back then, because I knew I would not be comfortable. And this is a result of other people’s uncomfortableness. When I asked Michelle how she dealt with it with her son she said she does not force him to go out with his sisters every time because she fears it might end up being a negative experience for him. [Michelle] “so you know sometimes when we are going to the park I’ll ask him ‘should we bring the girls?’ and if he says yes then we bring them, and I let him guide that. And sometimes he will say no, and it’s never cause of the reason that he’s embarrassed, it’s always because you know ‘I want to play soccer with you’ and he knows they can’t”.

Me: “And how old is he?”

Michelle: “He’s seven”

Me: “Right, so that’s around the age when I remember not wanting to… you know, because of this thing. Maybe you are younger and you don’t understand why people just stare at them, they just stare

Michelle: “You know, one day I caught him staring at a child with one leg. And I was like ‘Matty, I really don’t want you to stare, I understand maybe that might be interesting or different, but you shouldn’t stare’ and he was like ‘well, I really thought the leg was cool’ and I’m like ‘then you know what? You have to go up to that boy and tell him you think his leg is cool”.

Acknowledgements

Credits for the music in this episode goes to: http://www.purple-planet.com/.

I would also like to thank the people that helped me put this story together. Kim Clarke and Michelle O’Reilly who lent me some of their time to talk about things most people do not want to talk about. Dunja Baus, who reassured me everything was going to be fine at least 6 times throughout the semester (and she was right). To my classmates who were really supportive, and also lent me some of their time to peer review my draft. And finally, I want to dedicate this to my lovely sister, Regina. There would be no story without her. 

 

Works Cited

Huckstadt, L. K., & Shutts, K. (2014). How young children evaluate people with and without

disabilities. Journal of Social Issues, 70(1), 99-114. Retrieved from http://ezproxy.library.yorku.ca/login?url=http://search.proquest.com.ezproxy.library.yorku.ca/docview/1513357220?accountid=15182

Mandal, F.B. (2014). Nonverbal Communication in Humans. Journal of Human Behavior in

the Social Environment, 24(4), 417–421. Retrieved from https://doi.org/10.1080/10911359.2013.831288

Perlman, M., Kankesan, T., & Zhang, J. (2010). Promoting diversity in early child care

education. Early Child Development and Care, 180(6), 753–766. Retrieved from https://doi.org/10.1080/03004430802287606

Statistics Canada. (2008). Participation and Activity Limitation Survey 2006: Families of

Children with Disabilities in Canada. (Report 89-628-X). Retrieved from http://www.statcan.gc.ca/pub/89-628-x/89-628-x2008009-eng.htm

 

Recommended Sources

Centennial Infant and Child Centre's website.

The about page of Rett Syndrome's International website with a more detailed definition of my sister's and Kate & Charley's diagnosis.

A very interesting article titled "Please don’t treat my wheelchair like oversized luggage" about attitudes towards mobility devices.

A blog entry from a writer with Nonverbal Learning Disorder titled "When talking about disability makes us uncomfortable".