Friday, July 1, 2011

Guest post: "Don't pity me—I'm onto you!"

This guest post is from Tooner (her pen name), an adult with cerebral palsy who blogs at Accessibility in Canada. She emailed me to say disabilities awareness is her passion, and that she and her coworker like to talk about Max and how his life is going. I asked about her assistant. She told me that her parents hire assistants privately, using government money, through a Canadian benefit program. "You should move to Canada! LOL, because there's a lot more help here," she wrote. Tempting. I love Tooner's spirit—and what she had to say.

The other day I was talking to two guys. One was non-verbal and one was verbal. The verbal one said "You know, he can't talk" about the non-verbal man. I replied, "Yes, I do know that but I still like to talk to him."

It seems that people don't recognize that just because someone is non-verbal, it doesn't mean they are not a person. Like Max, I have disabilities, which makes it hard for some people to understand me. My muscles won't always do what my mind tells them to.

Now that I have the help of my communications device, it makes it easier to have conversations and be clear about what I want. I use the Dynavox Dynawriter, a computer that can speak whatever I type. I also use it to communicate with my computer. It surprises me how some people still treat me as if I don't think for myself. One time, somebody asked my assistant if I could have ice-cream and I said no because I know he was just offering it to me because I am in a wheelchair. He wasn't offering ice-cream to everybody that walked by.

People don't always understand me. I'll say, "How's the weather outside?" for example and they'll say, "Your favorite colour is what?" Sometimes, people pretend they do know what I'm saying even if they don't. It's funny because I always know when they don't understand."

I am an adult that does not like to be treated like a child. It bugs me when people think that I don't do anything or I'm lazy. I'm aways excited to meet new people who treat me like the adult that I am. I really like it when people give me responsibilities and hold me accountable to get them done on time—just as everyone else is. Even though it may be hard to understand, I really like it when people talk to me instead of my assistant.

I'm always curious whether people have had experience with people with disabilities, but some people are more compassionate, I guess!

I would like to start a discussion on this. It's my passion to get people talking about issues like these because it makes me feel better and not as alone. How do other people tend to treat your child? If you are a person with disabilities, how do they treat you?  


  1. I really hope this question/comment does not come across as offensive because I don't mean it to. It's something that I've thought a lot about though so here goes...
    A tiny little background, I don't have any children with special needs but growing up my best friend's brother had down syndrome and we spent A LOT of time volunteering for Special Olympics and really getting to know our teams. I loved it!
    Now, on to my question. This is something my husband brought up after taking a class called accesible recreation. He has a degree in recreation management so of course took a few courses on making sure recreation was accesible to all, including those with special needs. Throughout his class he ran into one giant problem while working with the special needs folks. They would say over and over and over that they wanted to be treated like adults, or like anyone else but then when it came to playing sports or doing other types of recreation they seemed to want special treatment, aka: the ability to have 5 strikes in baseball instead of three and other rule bending.
    So, I guess my question is, how do we bridge the gap, treat them like adults but make sure we don't offer things that exceed their abilities or hurt their feelings by not offering enough challenge?
    Thanks for listening!

  2. My daughter with SN is still little, and her differences don't stand out that much. She is 2 1/2, but seems like 1 1/2. There were times when people questioned why she wasn't walking at age 2, and that was fine with me. What wasn't fine was when people assumed I didn't "notice" she was delayed and either kept saying I need that taken care of, or they kept reassuring me that she will walk in no time.
    I knew her issues, and we were getting her physical therapy.
    While I think it's fine to ask about a delay, it's not okay to assert an opinion about it- if the parent is doing too much, not enough, the wrong thing, etc.

    I also think exposure is important. My kids have been exposed to Down Syndrome because we know a family where there is a little girl who has it. I know my boys will never see DS as "different" because they don't react anyhow when they encounter an individual with DS.

    We had a neighbor, an 8 year old girl with spina bifida in a wheelchair. My oldest son was 2 when we moved, so he doesn't remember, but he used to play with her (she loved little kids.) Recently my son (now 7) held open a door for a person in a wheelchair, which I was proud of, but then I was disappointed to see him staring, and not replying when she said, "Thank you." We did talk about it after, but I think if he had exposure to people in wheelchairs, like it ads, children's shows, real life friends, he wouldn't give it another thought, just like he understands Down Syndrome isn't anything abnormal, because he knows people who have it in real life.

  3. Trying to educate the world in treating adults as adults is an on going up hill struggle. But one i wont give up.

  4. I'm a relatively new reader, but had to comment. I was an assistant for a non-verbal little boy with CP for 5 years, and it used to break my heart when people assumed that just because he couldn't speak, he also didn't understand. I used to talk to him all the time, and he's still one of my favorite people to hang out with -- he has the best personality!

  5. The term verbal to me is so lamely used. Just because a person can not speak out loud...doesn't mean they can't hold a conversation. I talk to people all the time who hold great conversations through writing, computers, sign language etc...its all in the way you look at it.

  6. hi Tooner.
    My son is 5 but has developmental delay which puts him at about 2. He's almost non verbal but manages to charm everyone he meets. His personality wins people over. If they stare he shouts Hiya and smiles at them.
    Our only annoyance is that some people tend to treat him almost like a mascot. He isn't cute all the time. Sometimes he's grumpy or tired but people like to think he's lovely and smiley all the time.
    This presumption about him is because he is so young and so darned cute.
    Is this a taster of how some people pre-judge disabled folk?
    It's like they need a way to cope with being with him......

  7. Most people talk to my daughter at first. I always give her a chance to answer because she surprises me sometimes. She rarely does answer however. I appreciate when people at least try.

  8. I've found that most people have good hearts, they may be clumsy and not know what to do, but they don't usually intend to be rude, they just feel awkward and they don't know what to say. Sometimes, they're just ignorant, and by that I mean they don't understand what their eyes are seeing.

    The more people are exposed to people with different conditions and learn about them, the less awkward they feel. The less awkward they feel, the sooner the whole "inclusion" thing isn't an issue.

    People are generally good to my kids. We live in a small town and everyone pretty much knows everyone else. They tend to welcome us a bit more since my oldest doesn't melt down at the drop of a hat like he used to --he just grew out of that, and good thing, because we'd all get the stare/recoil treatment when he'd start in (he'd scare the crap out of everyone within twenty or thirty yards with his screeching, which had a very high and grating pitch to it and seemed to go on forever--a sound, my father used to say, that he didn't think was possible to reproduce!!!!). At those times, he wasn't particularly easy to love, if you catch my drift. The only way to "make it stop" was to remove him and go home to "safe" territory, which made it hard for us to go out for supper, go shopping, or even go to the playground. He was hyper-sensitive to EVERYTHING, it seemed, but now he's considerably more mellow and life is much easier for all of us as a consequence.

  9. I just wrote a post about the pity we get when I tell strangers that I have a child with SN. I hate when they respond with a negative comment like, That's too bad, etc. I want them to see her as an amazing little girl and the biggest blessing in my life.

    Some rough moments we have are when we are out and about. Gracie likes to reach out to people and she will vocalize, and it catches them off guard. Most of the time they will react by pulling away, going the other way, or just ignoring her alltogether. Every now and then, someone will respond by telling her hi and talking to her.

    It's so nice to see that you have a communication device. How long have you had a device? Gracie just got a Vantage Lite in December and we think it will change her life!

  10. I have to admit that I have pretended to understand many people when I haven't really - either they mumbled, had a strong accent or the background noise was too loud. None of these people had a disability but I was too embarrassed to ask them again to repeat themselves. I know I would be incredibly uncomfortable if I attempted a conversation with anyone who I then couldn't understand.

  11. I have read your blog for a long time now, I even subscribe to it but I never commented, at least not publicly because I feel we live in different worlds. But this post touched me so much that I decided to share my expirience probably that will make you people over there to see where we still are over here.
    On Sunday last week, that was the 26th of June, I went to mass with my five years old angel who was well dressed in one of her Sunday bests. She is diagnosed with spastic quadruplegia cp, but she is a beauty to behold.
    After the mass, I walked over to the reverend fathers' house to leave a message for a priest. On our way back to the packing lot, a parishioner hurried up to us ( of course my angel was in her push chair) and stock out a N20 bill to us(twenty naira, something like a penny or less than that)) I put up a big smile and told him that we are no beggers, he insisted that he just wanted to give that to my daughter and I kept telling him that we are not beggers, and I asked him if we looked like beggers!! It took the intervention of some by standers to ward him off. Hm... Here, people are not used to seeing kids living with disabilities in public with their parents. When they are seen, they are on out to beg for livelyhood, especially children with cp and sometimes adults too with their distorted bodies. So when you ask how do people treat your child; I smiled and remembered the stares, the withdrawal, the pitiful look and the all sorts from people, even in the church, the unsolicited "information" about the miracle worker somewhere somewhere, but you know what, in the mist of all these, I have my smiles and ready to educate them for I know that their problem is lack of knowledge. I have ready printed information on cp which I thrust into their hands and ask them to go read. A very few have changed their attitude, recently, one offered to watch my baby while I go for communion. you can visit us at

  12. Thank you for your comments. @chizimuzondund: I live in Canada and people still try to give stuff to me just because i am in a wheel chair.
    @Meggan Hayes: Basically you have to look at their abilities and see what they can do and try to adapt from there. Or find the person's interest and try to find something that they can do that is similar but within their abilities.
    It is really hard to do. Perhaps try talking to an OT about adaptations. Just always make sure you check with the person who you are doing adaptations for to see how they are feeling about it or ask them for suggestions.


Thanks for sharing!

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