BCEdAccess Society

There is one key belief system in the general public that people with disabilities have to navigate. 

Deep down, the general public believes that accommodations are a form of cheating. That we are lying. We are often not believed. This goes beyond just the education system. This involves health care, employment, etc. The underlying belief is that we are getting away with something. We are taking advantage of them or the system. To fight us and our wrongdoing, they must catch us in our lies. “But, you didn’t need this last time.” Like it’s some gotcha moment. 

I am a person who stutters. My stuttering changes day to day, month to month, and year to year. Even 5 min from now. I could be speaking fluently, and then suddenly I can’t get anything out of my mouth. To the point that people think I am acting and joking around. Then they imitate me, thinking this is part of the joke. Ummm. No. I am not pretending. 

My stuttering is impacted by many things. How much sleep I get. My stress levels. Depends on what I am talking about. If I am passionate or angry about the topic, my words come flying out of me, very fluent. It’s like I don’t even stutter. When I speak in front of an audience, my stuttering can change. What my speech will be like on Friday 10 am for a work meeting, I have zero idea. I can’t predict. 

 For each disability, how capacity changes is going to be disability specific. Society really struggles with this concept.

Disability is fluid. Capacity changes. What someone needs support with on one day will not be consistent every single minute of the day, for all days to come. We mask a lot. Trying to squeeze ourselves into society’s tiny measuring cup is exhausting. The result of chronic ableism. Masking occurs for a lot of people with invisible disabilities. We learn early on that it is not safe to stick out, and have all eyes on you. We learn that we will be under surveillance and held to unrealistic standards if we get your attention for the wrong reasons. 

In the school context, as parents and caregivers we struggle with being believed when we advocate for our children. Our children struggle to be believed. Instead of having their disability-related needs acknowledged, they are accused of being lazy or unmotivated. A character flaw. A failure is their personality. Could not be further from the truth. We know how hard they work. How deflated they are when their needs are not met, and the expectations are impossible.

Providing lived experience is a powerful way to share stories and teach people the reality of our lives. I want to provide you with an example of a free accommodation request. 

When I was in high school, I had to give a speech. If we were 30 seconds under or over 30 seconds, marks were taken off. My stuttering as a teenager was more intense than now. There was no way I was going to be able to do that. I would not be able to predict how much stuttering I would be doing to aim at ending my pre-written, memorized speech in that narrow target of time. It was an impossible expectation. If my stuttering was more intense that day, then as I am talking, I would have to perform the mental gymnastics of figuring out what I was going to edit as I was talking and trying to remember my speech. 

I asked for the 30 seconds to be one minute. I was told, “No, that wouldn’t be fair to everyone else.”

This denial of accommodation then forced upon me a ridiculous amount of hours.Hour after hour, reciting my speech over and over in hopes to re-wire my brain and decreasing the amount of stuttering intensity, and also have the speech so completely memorized that I could do the required mental gymnastics. 

Right. This was apparently fair to everyone else. 

We live in a capitalist society that believes in competition. This leads to suspicion. As humans, our brains are also wired for fairness. We want everything to be fair. We want everyone to start at the same starting line to run the race of life. This is a problem. A neurotypical non disabled perspective on fairness for someone with a disability is going to be off the mark, because they don’t have the understanding of what it’s like to be in that person’s body. The lack of understanding creates disbelief. You don’t look disabled, so how can you be that different from me? Just because I am disabled doesn’t mean that I am aware of all disabilities. Disability also isn’t exactly the same in every single person, either. Society likes to put people in boxes. That’s where everything falls apart. We don’t work that way.

Society’s understanding of disability needs to change. What has been so fantastic is that there are so many more disabled and neurodivergent bloggers and authors. Writing about their disabled experience. We need to elevate their voices. Read about people’s lived experiences and learn. Storytelling can be a powerful change mechanism.

Even physical disabilities are fluid. Chronic pain, for example. Another example, I have a friend who has cerebral palsy. Her walking capacity changes depending on the day. Some days she needs her wheelchair, and other times she goes chunks of time without it. This really confuses people. They think she’s using her wheelchair to gain advantages in life. Because to them, she’s cheating. An accessible parking pass is cheating. Why didn’t we all just think of this? (Sarcasm). People actually approach her and are aggressive in their accusations.  

Think about that for a second.  Our children are being accused of horrible things. Of lying. Trying to manipulate people. Let’s look at what you are accusing us of when we advocate for our children. Because I can tell you, when I am not believed, it feels like you’re punching me in the gut. A trigger from always being accused of making things up as a kid. The fact that I have to remain composed and have this conversation with you, defending such a core part of my children, and not turn into a werewolf, I think, is award-worthy. 

What is ironic is that people with disabilities try and blend in with the wallpaper as much as possible. We don’t want to stick out. We know it’s not safe. Risky. We have no idea how people are going to respond to us, and typically, it’s not great. So when we gather all the courage we can to have these often uncomfortable accommodation conversations, to not be believed, is beyond a horrible experience. 

For most disabilities, accommodations are a lifeline. Without them, our children have little hope. They need them. Otherwise, they are excluded from education, organized play and society. I encourage everyone to research and understand the concept of equity vs equality. Equity is fairness.

Trust me. We are not gathering, having secret club meetings, high-fiving over the accommodations we got you all to give us, laughing up a storm. But we are gathering. We are gathering in support groups. Crying. Angry. Trying to figure out how to survive life. To advocate for our kids, when many of us have the same disability as our children. Now all of our childhood experiences are being kicked up again, played out in front of our eyes. But worst. This is our kids now. Take me. Do this to me. Just spare them.  

Kids are having their self-esteem sucked out of them, are self-harming, and dropping out of school. In our previous blog, we questioned, Is this Systemic Oppression or Systemic Abuse? A lot of accommodation requests don’t cost any money. It’s an attitudinal barrier we are dealing with. Running a lap around the school so my child can sit for math work won’t cost you a cent. And yes, he needs this, and no, we aren’t lying. 

Many of our parents in our Facebook group responded to a poll that a lot of people and their children are struggling to be believed. This isn’t a unique situation. This is part of the disabled experience.

Learning to self-advocate for yourself as a kid, is HARD. Especially when the adults around you don’t believe you. Your trust in adults can change in a second. 

Certain elements of self-advocacy need to be in place.

1. The person on some level needs to be accepting of their disability AND be willing to talk about it.

2. They have to be able to identify when they need help.

3. They need to identify what they need help with and have the language to express it.

4. They need a trusted adult who has proved their willingness to listen to them over time.

5. The child needs to feel heard.

6. The child needs to feel that this trusted adult will believe them when they say they need help.

7. This needs to be repeated enough times and be predictable enough for the self-advocate to feel comfortable and safe to advocate for their needs.

From a rights-based advocacy lens, here is a human rights case where the tribunal reflected on self-advocacy for children in an education setting. 

Student (by Parent) v. School District, 2023 BCHRT 237

[90]           Generally, it is the obligation of the person seeking accommodation to bring forward the relevant facts: Central Okanagan School District No. 23 v. Renaud, 1992 CanLII 81 (SCC), [1992] 2 SCR 970. This can be challenging for children, and especially challenging for children with invisible disabilities. I agree with the Parent that children who require accommodation in their school are in a different situation than adults seeking accommodation. Though they have a role to play in the process, that role will be age and ability-specific, and the burden cannot be on a child to identify and bring forward the facts necessary for their accommodation.

Unlearning what we think we know about disability as a society is key. We need to desperately create an environment where disabled voices, no matter in what form they communicate, they are are all heard AND BELIEVED. Children’s voices, especially. Listening to children and believing them doesn’t cost us a thing. We can start doing more of that. Now.