It’s like this

Your daughter wants to sign up for a fun neighbourhood activity.

She has a disability–she’s scared about how people will respond to it. Respond to her. If they’ll point or stare (it happens). If they’ll ask her rude questions (it happens). If they’ll act like she doesn’t belong there, like she’s lying about it, making things up (it happens). But she wants to go, and it could be a good experience. Making friends, learning new things, being a kid.

The facility isn’t accessible. The facilities are usually not accessible so this doesn’t surprise you. It’s a community with limited facilities; maybe this was the best they could do. You, your daughter and (sometimes) her walker learn to negotiate the stairs that are the only way in.

One of the leaders of the group acts like everything related to your daughter’s disability is an enormous imposition. As if you are lucky she is allowed to be there at all.

She makes stupid arbitrary rules like all the kids need to stand. Your daughter can’t stand for very long wihout her walker or some kind of support. At first she tries to follow this rule and ends up in pain after every meeting. You coach her to advocate for herself–to take the damned chair and sit down when she needs to, because damn it, she shouldn’t be in pain after a fun community activity.

You worry about how off-site trips are going to go. You go around the leaders, communicating with the head office to ensure it will be accessible and she won’t be excluded. You don’t want to make things awkward by making the (adult) leaders (whose job it is to implement accessibility in the meetings and activities) upset (in case they aren’t able to control thesmelves and blame your kid and take it out on her).

She has now participated in two full years of this group. It is the start of the third. The leaders have had two years to get used to your kid, her physical limitations and her walker. You show up to drop her off and are told they will be in out the neighbourhood. That their route uses stairs. That she cannot bring her walker on foot. That the car is too full to bring her walker. Your daughter cannot come to a two-hour on-foot activity unless she is willing to hurt herself to do it.

Appalled, you turn around and go home.

On your way to the car, one of the leaders asks you to take home some cookies to sell.

The organization, via the head office, has a wonderfully inclusive accessibility policy.

The policy is obviously flatly disregarded by the local volunteers.

It happens. Volunteers are hard to come by. Hard to discipline; if they don’t follow the rules, they can quit. There’s no penalty. It’s hard to maintain oversight. It’s not like head office visits the individual groups to monitor accessibility. They only find out about problems when a parent calls to complain. Most of the volunteers are wonderful, and do everything they can to make sure that every girl can participate in every activity, that this is planned ahead of time and communicated.

But not all.

Some of them act as if they believe that disabled girls should stay home and not trouble people with their needs.

But you and your daughter have paid the registration fee like everyone else, and it’s the fucking law that there be no barriers, so you call to complain.

The head office is going to investigate. They seem shocked and genuinely upset abut the experience your daughter had, and you’re relieved that they’re taking it seriously. You hope something will be done that won’t result in the volunteer resigning and thus breaking the group. But this is a peace you’ve bought with your silence for two years now and you and your daughter can’t pay that price anymore. Pay it with days of sore ankles, sore backs, sore hips, tears, baths with epsom salts, motrin doubled up with tylenol.

Your daughter is a person who is empathetic and compassionate, much tougher than she should be, who tries hard to be good and doesn’t want to be a bother, who wants to follow the rules. She expects to be excluded, stared at, bullied–because she has been. She came home that night angry and hurt. She felt singled-out and less-than. In her words, she felt “degraded.”

The next night she cries on your shoulder.

Not because they hurt her. Not because she was excluded. Not because she missed out on an activity. She expects all of that.

But because she hadn’t been able to advocate for herself in that moment. Because she couldn’t find the words to say that would fix it.

She blames herself for being treated badly, then blames herself for not being able to say the right words that will fix it in that moment.

That is the weight carried by a visibly disabled thirteen-year-old. That is how much she already expects of herself, to be able to participate in the things that other kids do without a second thought. To bear the pain and anger of mistreatment so well that she can respond with perfectly persuasive eloquence.

This is the world we’ve made for disabled people. Disabled kids.

It’s not their job to fix us. It’s our job to fix it.

(And you can apply this, with some changes, to many groups in our society that face discrimination. That they are so often expected and even required to face the pain, anger, humiliation, even violence of being excluded and attacked with grace, equanimity, composure and eloquence–to take on the burden of education and conversion with love and compassion towards people who extended neither–is inhumane and inhuman.)

We live in a province with two pieces of legislation that require organizations, businesses and institutions to remove barriers to full participation for disabled people. The groups always have fantastic policies in place, with wonderfully inclusive language. And yet I know whenever Frances starts something new, or goes somewhere new, I need to budget time to call people about removing those barriers, often more than once. It’s exhausting and demoralizing. And I think about my little girl having to do this for the rest of her life, and–

24 thoughts on “It’s like this

  1. Oh, this makes me so mad. I suspect I know the organization. They were the same ones that made things uncomfortable for us since we needed a “my daughter won’t be here every weekend but still wants to participate” exemption. The organization spoke one line. Her leader quite another. If you need me to write or call on your behalf, let me know. This is so outrageous. And big hugs to your girl. She deserves so much better.

  2. The community group seems not only wildly unaccommodating, but blatantly disrespectful. If the leader knows that there will be a situation (like going out into the community in areas with stairs and other terrain issues which will make it difficult to get around), they should at the VERY least notify you before-hand to give you a heads-up on what is going on. It’s been 3 years; that should be more than enough time for the leaders to understand what they need to be doing. I’m so infuriated for you. I hope that something good comes out of this horrible situation.

    1. I agree. There were so many ways this could have been handled. Choose a different route; empty the bloody car; alter the event so walking isn’t involved; let us know in advance so we can plan. There was really no excuse for this.

      We’ll see what comes out of their internal discussions and then figure out what to do next.

  3. I’m so sorry that both of you had to deal with this. I wish I could be surprised, but I am not even a bit surprised.

    Even if places are accommodating when asked, the fact that they always need to be asked is exhausting and demoralising. And that’s a bit ‘if’. I am edging my own way further into disability – not being able to just suck it up any more – and boy. It’s a rough ride. I am thankful for the people who do support me, or who ask for me, but they can’t always do it. And they’re not always listened to. It’s a real shitty world where people feel the need to punish anyone – let alone a kid – for being disabled. As if it isn’t already enough. As if they are being rude just by being present.

    I hope that volunteer has a real revelation. Soon. Very soon. I hope she understands the full force of her behaviour.

    1. I’m sorry to hear you’re struggling with this too.

      We’re still waiting to hear how the organization plans to deal with this. Which is also exhausting and demoralizing. Why is this hard? One of your adult volunteers discriminated against a child member on a protected ground; you could be in legal trouble, even if it didn’t violate your policy.

      1. Sounds pretty simple to me, honestly! Except it never is. Here’s hoping they get it together quickly so you don’t have to carry that weight around any longer.

  4. Wow. This was heart wrenching. I’m so sorry for your daughter and appalled by the behavior of the ADULTS who are in a position to help and facilitate an environment of inclusion and acceptance. I’m sorry for you seeing her in physical and emotional pain. I’m sorry that people are so awful.

  5. One of the hardest lessons we have to teach our kids is that not every adult acts like the adult we are trying to raise our kids to be…some will forever be trapped as insecure, lazy, childish individuals who are incapable of thinking about anyone other than themselves…thank goodness you can be a role model not only to your own daughter but to others as well ❤

  6. Yeah it is a nuisance to have to fix things, organise, modify etc etc, but they only have to do it for a couple of hours a week, you daughter and all others need to do it for life. Demand your rights and never stop. The worst thing is the adults are role modelling to children around them… don’t be inclusive, don’t bother, be annoyed and inconvenienced and hope they go away, be selfish, self absorbed and self important. Appalling.

  7. Well, I finally got WordPress to let me post somthat I can tell you how much my heart aches for both of you. And also to say that the damned app just ate my comment a out your on-line debate with the idiot. Who was never a stand up comic past the first engagement. He is just too stupid.

    1. Thank you lovely. And I appreciate your determination to leave a supportive comment. 🙂

      I agree with you on the comedy thing, but I think there are enough mean-spirited jerks in the world to have gotten him a handful of engagements. Lord though–“if don’t laugh at my jokes you don’t understand humour because I am a comedy expert on account of my failed stand-up career, but if I don’t laugh at your jokes it’s because they’re intrinsically Not Funny.” Just, what kind of porridge brain puts that together?

  8. I am sorry ! That is so terrible that your daughter blames herself and has low expectations and thinks she is a bother. Glad she has a strong mother to counteract all those things which are so wrong. Hope some positive action comes of letting the head organisation know what happened. I would have been tempted to tell the leader to shove those cookies somewhere dark and narrow and smelly.

    1. Believe me, that possibility crossed my mind. And still does. We are still working through the issues so no happy endings yet (or sad ones). But we’ll see.

      Thank you for the supportive comment.

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