What I See

‘I love you, Sebastian. Do you love me?’ Tallula leans over me to see her big brother, anchored down into the accessible spot on the GO bus back to the train station. Sebastian smiles. Tallula sees him and repeats his ‘yes’ out loud in case I missed it.

I scroll through photos tonight to look back at our short adventure to Hamilton for part of the long weekend. I see Sebastian’s mouth open as he tries to say something or vocalize his yes. Everyone takes for granted those muscles that are moving together to allow you to speak. Everyone is afraid of what it means to not be able to speak.

At the library today the kids stared and their mothers hushed them and asked them to move away. We waited in line to get some ribbon ‘hair’ for Sebastian’s puppet and two girls walked right in front of us and though they stared they didn’t see Sebastian. They saw a boy in a wheelchair and because perhaps they’ve never seen one before they thought he wasn’t a person worth waiting in line behind. So I reminded them that he was. ‘You see this little boy, he’s waiting in line too. Please stand behind him where the end of the line is.’ The woman waiting to help us told me not to worry, she would take care of us first. But who will tell these kids that my son is a person too? He is a kid. He likes to make puppets and have puppet shows even if I have to be his working hands. Their mothers won’t tell them as they call their children to the door to leave instead of saying hello. Their teachers won’t tell them as they call them back from staring instead of coming over to introduce themselves.

I am so tired of all of you who think it’s ok to ‘shhh’ your children or taken them away. I am so tired of you who think my son is not worthy of a play date with your child because he needs help to do things; even when your child asked for one. I am so tired of you who keep kids like my son out of your schools so that society will never learn to include everyone. I am so tired of a community that is so friendly and welcoming when it’s just my verbal and outgoing daughter with me but when my son who communicates differently, seated in his wheelchair, is there suddenly the community is gone.

After two weeks of doing crafts and events at the library with Tallula and feeling like it would be ok to bring Seb I was reminded of just how much people suck today.

You. Who let your kids stare. You. Who take them away instead of saying hello. You don’t let your children stare rudely at others without disabilities. You teach them to smile and say hi. So why is it different with my son who is friendly and eager to meet others and engage with them?

When I see my son I see a bright boy who loves life and embraces the opportunity to make friends. I see a boy who loves jokes and has a pretty wicked sense of humour. I see a boy who deserves to be treated as the child he is. I see a boy who is adorable and approachable and I don’t understand why more people can’t see the same thing.


24 thoughts on “What I See

  1. I see the same things you do Kara. I have tried to trick my mind and only see the disability. It worked, but, it’s so boring! Only seeing a persons disability, makes me feel sad and like I don’t understand. I wish kids would say hi more and parents would open their eyes. What if it were someone you know, wouldn’t you want the world to know them?!

  2. As angry and defeated as you may feel … keep loving and including and doing things with your kids. When all of us do that and all of our people with disabilities become visible their difference will no longer be important. Keep fighting the good fight. We, mothers of differently abled kids are with you! Xoxo

    • Thanks Filipa. You are so right. We won’t stop living and enjoying the world around us! Recently we were out discovering a new neighbourhood and a young woman stopped to talk to Ali and tell him how awesome it was to see our family out and about, all together. She had a sibling with a disability and it was rare for families to be out when she was younger but hers always did it and she was happy to see ours doing it too.

  3. I loved this! I also have a younger daughter with no medical issues, and I am so bloody sick of people speaking with her, but ignoring my older son in a wheelchair. Or the ones who greet him with a sad face. I can’t (or don’t want to) imagine the negative effects of repeatedly being looked at like this.
    (Also…I remember meeting you and Sebastian in the HB waiting area a few weeks ago… I think you commented on my son’s cool wheelchair cushion. Nice to find your blog!)

    • Thanks Jennifer! I am so happy to connect with you online. I remember meeting you and your son too. There are so many instances that we experience this from day to day. Unfortunately this was just a sliver of our day as we had a couple other situations in the day where Sebastian was totally ignored alongside his sister or even next to me. I suppose that’s what got to me by the end of the day!

  4. I really appreciate your words. My two daughters always ask me if children in wheelchairs are “sick.” My response is always that they are “not sick” but rather, “able to do different things” and able to “be their friends.” Thank you for affirming that this is the right approach. Xox

  5. Having spent a lot of time with Sebastian at school, I came to see how amazing and wonderful he is. Sebastian is so smart. You’re completely right Kara…it really does suck! So much comes from a simple hello.

  6. I worked with adults with a disability well before disability entered our family- both in Cooper and my husband’s mum. The exhaustion of educating people is never ending and the hurtful comments continued despite myy efforts- some of them being so hurtful they fill my eyes with tears many years on. I try to think of it in terms that it is just fear in people but I know it is also how parents raise their kids too and that is hard to accept. Kara, thinking of you in those hard times- sending love and a ton of patience (and maybe some wine too). xoxoxoxoxo

  7. Thanks once again for writing about an experience that we also have had to live through. It makes me feel so much better to know that it’s not just me that feels so hurt and angry about the way other parents and kids dismiss our kids. Thank you for writing in a way that I can share with my family so that they can understand the issues. Because if I wrote it, the words would be too angry to share. I love your blog. It is excellent.

  8. We do not live in Hamilton and may never meet you. But we say hi to everyone and smile and look to see what gifts they offer the world. Because that is how we like to be treated. It really is the golden rule. Every human being has both unique gifts and unique challenges. Some are visible and some are not. A smiling face is universally understood. Please find strength in those you meet with open hearts and minds. WE WILL CHANGE THE WORLD. Together.

    • Thanks for your kind words Nadine! You definitely sound like a wonderful family and we have met some great folks when we are out. Sometimes more so when we are outside Toronto (where we live). We spent the weekend in Hamilton and were so happy with the accessible playgrounds. The folks there were pretty friendly too. It’s definitely people like you that help make the world a better place. 😊

  9. I admit I haven’t read any of your other posts although I will now. I have an 11 year old son with CP and my husband and I comment on this every time we go out with our son. People are cruel. Sometimes adults are worse than the children. I’ve gotten to where when I see someone stare at him I say “would you like to say hello?” Kids usually will and ask about him. I shake my head at some adults because they act like he’s contagious. Thanks for posting what so many of us are experiencing and thinking.

    • Thanks so much for stopping by and sharing your experiences. I too often reach out to kids and adults to say hello. Sometimes I also just say hi in a demanding way because I’m so annoyed at them staring! It’s hard to have patience with everyone all of the time.

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