Advice for professionals and society – Claire


Claire suggests that health professionals ask for the caregivers’ perspective. Some care decisions may impact their lives in ways you may not realize.


I think it’s just that thing, I think which is probably relatively common, is that I think anyone with a disability—well any of us, in general have really unique needs when it comes to our healthcare, right. And Luke in particular has very unique needs because he’s a pioneer. So, I think it’s just reminding them that they may know a lot about a particular disability or illness, but I know a lot about Luke, and Luke knows a lot about Luke. So listening to my particular perspective on what’s comfortable, or what’s troublesome, or what’s different, or that… giving the opportunity for us to explain, or to explain the impacts of things. Like, for example today’s a good example. Luke’s armrest wasn’t working properly on his wheelchair and so he went back to the place today that had kind of set it up for him. And his armrest is important not just to hold his arm up, but because his joy stick is connected to his armrest, and his arm needs to be positioned in a certain way for his joy stick to be able to work, and his joy stick needs to move out of the way in a very certain way so that he can use his mouse pad for his computer. And his armrest size is very important to fit through doorways and get around corners in our apartment building, right. There’s so much more than just that armrest.

And so, they fixed it today, but they fixed it differently and put new pieces of equipment on it. And so today we were talking about—like, Luke did manage to get into the bedroom, but usually the caregivers move his wheelchair out of the bedroom to charge it up at night, and Luke’s now saying that’s not going to be possible because it’s such a tight fit that there’s no way they could do it without really wrecking the door. And now he’s wondering if he can get around a particular corner he needs to to get into the van, and when I just set him up on the computer, it was difficult for him to kind of get set up on the mouse pad because of now the different way the armrest works.

So, I think everyone looks at their unique kind of piece, whether it be the respirologist, the cardiologist, the GP, or the wheelchair equipment people or OT, and that’s where it’s helpful to talk to Luke and I about, before changing something or suggesting a treatment plan, about so much we’ve learned. You try a new position and then it creates a new problem. Or you try a new treatment and then it’s going to create another problem. And often Luke and I are much better able to anticipate what else it might affect than those people. So, I think that would be the advice I would give—is ask the question about what else it might impact.

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