Life in a Wheelchair

 

This week, Robert Norvelle (47) shares his experience of life in a wheelchair. Spinal cancer left him on crutches at the age of 13. He later developed a 'hunchback' curve in his spine and after three more surgeries, found himself in an upper body cast and neck-ring for a full year. Unfortunately, the curve was only partially corrected and he was still on crutches.

A few years later, after starting at the UofA, he found his right foot beginning to drop as he would take a step. It turned out he had another 'inoperable' tumor in the tailbone area of his spine. The doctor gave him three options: have his lower half amputated, go through radiation and chemotherapy, or do nothing. Fortunately, he opted to try the radiation and chemo. Unfortunately, he lost the function of his right leg. He could no longer walk on crutches and left the hospital in a wheelchair. He was 21 years old.

Debbie: At the time, did you find a change in the way people related to you?

Robert: Yes. Most of the initial reactions were of sympathy, since most knew me before the disability. But after a while, they acclimated to my situation and treated me pretty much as before. To the point of almost forgetting I was even in a chair until we would find me in a situation that I couldn't navigate or physically do because of the chair. They would mostly just say, "I didn't even think about it". At first that bugged me, but later I accepted it as a compliment, in that, they didn't see the chair but rather just me.

Debbie: Tell us what it's like being in a wheelchair and surrounded by able-bodied people.

Robert: I notice this at work and in the world. I am, as far as I know, the only wheelchair-bound employee at my job site. That can be intimidating at times. When I am at work or dealing with peers, I sometimes get the feeling that others think I am a token hire. That generally fades after they get to know me and what I can do. I do find it a disappointment that people pre-judge and evaluate you before even knowing who you are and what you are all about. My wife calls them stupid people, I call it human nature.

Debbie: Do you prefer people to ask you about your disability or pretend it doesn't exist?

Robert: I love it when people ask me, because I give them a condensed version and it always makes their jaws drop. I am not sure how that affects their overall opinion of me. The usual response is, "Wow, you have really been through a lot!", and "Wow, you have really done a lot with your life in spite of all that!" Some people pretend to ignore it and that's ok. I love it when young children are walking with their mother or father in the mall and come up to me or ask their mom, "Mommy, what happened to that man. Why is he in that wheelchair?" I don't like it when the mom or dad shush them or say, "That's not nice". Sometimes, if an older child comes up to me and asks, I just say I hurt my leg. That usually suffices and everyone moves on. But, generally I'll take the time to explain, because it's human nature to ask why things happened.

Debbie: Are there consistent problems that you run into, such as a lack of wheelchair access?

Robert: All the time and I accept that as the way things are. I believe people who are not disabled have a harder time when I have access issues or am treated differently because of the chair. I do my best to let my wife know that is the way it is. One example, we love to travel. I am obviously treated differently at airports, because I can't get through the normal scanners; I have to be manually body searched. My wife gets so angry. I also have problems when trying to access things like viewing areas (Space Needle in Seattle). I can't go out to the viewing deck, so I send my wife to take pictures for me. Or, the Grand Canyon, same thing. Stores, restaurants, friend's houses, vacation spots…the list is long. But, I do try to make the best of it. It has gotten to the point where my wife won't do something if I can't. I tell her, "Go ahead, I'll wait here". She just repeats, "No, if you can't, then I'm not going to either".

Debbie: What advice would you give to able-bodied people who are unsure of how to relate to people in wheelchairs?

Robert: That is the $100,000 question. My wife found out how to relate by taking a chance and marrying me. She is the one thing in my life that is perfect. She literally saved my life. I don't know how long I could go on in life without having someone like her to share it with. I am sure that is the same if you are in a chair or not. My advice to able-bodied people is be yourself. And, treat people in chairs like you would your own family (good family – that is). Almost everyone I know, knows someone, whether in their own family or circle of friends who has a disability. And to people of disability, I say don't despair, there will always be someone who is worse off than you. Be thankful for what you have.

Comments

[shona]

Debbie,
i just love the insights you bring to those of us who aren't around disabled people on a regular basis. Keep up the great work!