Even me!

I understand that not all disabilities are visible, and not everyone will have the same abilities as everyone else, but it really annoys me when people who are clearly completely well park in the disabled spots.

People who are “just quickly” popping into the shops are the worst of the bunch. I can get on my high horse all day long, but I too, am guilty of what my hubby has jokingly called “quadism”. Quadism is another -ism, a reaction to prejudice towards a group because of some arbitrary differentiation. In this case, because I am a “walky” and not a quad, I am often (jokingly) accused of being quadist by my hubby. But maybe I am.

I am so very comfortable with the people in the rehab who have various different abilities, some with amputations, some with spinal injuries, some with a mixture of various things, and I began to think I was quite the ambassador. I began to think I was just the perfect person who could treat people (like my hubby) who face prejudice every day as just other people in my path without being embarrassed or uneasy. But, apparently I am not.

Yesterday, one of the inmates returned to the rehab after some medical issues took her back to the hospital for a bit, and when I saw her, I was suddenly unable to talk to her about the fact that her left leg is amputated. I found myself being stupid and using all sorts of implying words and stupid clumsy phrases instead of saying what I wanted to say which was: “I didn’t notice that your leg was amputated before, was that from this most recent stay in hospital, or is that why you came here in the first place?”

She kind of looked at me like I had crawled out of a piece of cheese, and genuinely didn’t know what I was talking about. It was a lesson for me. Specially because Colin then in a loud voice said: “what my wife is trying to say is that she didn’t notice your leg was amputated before”. HA HA HA

I am learning slowly about the etiquette surrounding interactions with people who are different than I am, and I have had some humbling experiences.

I have learned the following:

> It is not ok to rush up and help people, especially if they show NO signs of needing or wanting help. It is better to wait a few seconds, and then offer – do you need help or are you ok? I have learned that for people who are looking for wins, or who even just want to feel independent, they need the win. This goes double for those who may be very early on in their journey.

> It is not ok to touch any assistive device a person is using, like a wheelchair, or crutches, or even body braces, etc. This is also true of their devices while they are not in use, but are standing nearby. Something like a chair becomes so integral to a person that to touch it without permission is (not like, it IS) an invasion of personal space.

> It is ok to talk about the issue at hand, and ask people questions about their differences. If they have an amputated leg, they don’t mind if you use the words, or ask about it. Obviously, you need to be socially aware, and not walk up to someone in the middle of his meal and say – dude – how did you end up in a chair, but people don’t mind questions, and are sometimes even happy to be able to answer questions about how they have found ways around certain issues. For example, Colin was waiting for us at the Pick ‘n Pay a little ahead of us, and a man started asking him questions about his chair, and where to get it, why he had the special wing back thing, and so on. Turns out he wanted info on suppliers and options for his son. Colin was very pleased to be treated as a human being who was able to answer questions about himself, and not be treated like a small child who had to have his mommy answer about the chair etc.

> People who are differently-abled don’t appreciate being spoken over or ignored. For example, at the very beginning, the nurses would sometimes ask me what he wanted or only listen to me for answers instead of asking him what he wanted and how he wanted his pillows, etc. This has been perhaps the most important one for us so far, and it has highlighted how isolated, dependent, and not in control a person feels when they are suddenly cast into quadriplegia. I am sure it is similar for many other abilities.

> There is a sort of camaraderie between groups of people who are similar, but this doesn’t always just extend to you, even if you are a super supportive spouse. Although the people at the rehab with Colin are very friendly to me, and include me a lot, I can see that there is a sort of secret “knowing” among those who have the same challenges. This should go without saying, but somehow I just thought I would be included. This makes sense if you think about it. I am not the one in the chair, who has had his life changed so completely. He is the one who has to face these challenges daily, and find ways around, or ultimately come to terms with the fact that it is something he may never again be able to do. Yes, he is fully appreciative of my support, yes, he loves me so much, yes, he loves my help, etc; but my role is not the same as his. And yes, my life has also changed, I also have to mourn the loss and changes, and yes, I have also been through a trauma, but he is the one who is changed the most – in the case physically. This is also something I cannot completely comprehend and be because I am not the one who had the physical trauma.

> there is always one step into almost all houses in the world. Try this for yourself – ask your friends who many stairs they have in their house, and chances are they will say there are none. This is not always true. There are usually 2 – one at the front door, and one at the back door. This needs to be taken into account for people who use assistance to get around. This also goes for door widths, space in bathrooms and lavatories, and passages. For example, going into your Dentist’s rooms – is there enough space for the chair to turn in the corridor to go into the room itself?

I am still learning every day, and hope to be better and better every day. For now, I am content with the strides we are both making.