Tuesday, May 31, 2016

Live Your Life Outside Your Blog: Guest Post by Lene Andersen

Live Your Life Outside Your Blog: Guest Post
by Lene Andersend



Photo thanks to David Govoni
There are some distinct benefits to your juvenile arthritis causing you to use a power wheelchair since your teens. For one, no one doubts that I have a chronic illness.

The first symptoms of juvenile idiopathic arthritis (or, as it was known in the old days, juvenile rheumatoid arthritis) arrived when I was four years old. It took another five years to get a diagnosis.
Initially, the JIA settled in only in two joints, but when puberty hit, so did the disease. And hard. Fast-forward through a bad systemic flare that almost killed me, fused hips, two years spent lying in a hospital bed waiting for hip replacements, and finally getting those hip replacements at sixteen. They enabled me to sit up and use a power wheelchair and I went home to live a pretty normal life. This involved going to school, moving to Canada (I am originally from Denmark), a couple of university degrees, some work, love, loss, friends, and fun. In other words: life.

But it is a life lived from a wheelchair with very visible signs of RA on my body and it has some interesting challenges. There are the looks and questions from the people I meet, and then there are accessibility issues.
Looks and questions are easier to deal with. Canadians are usually extremely polite and aware that you shouldn’t ask too many personal questions. If they do, it’s almost always prefaced by “I hope you don’t mind me asking ...”

Photo thanks to David Govoni
And I don’t. Mind, that is. I actually prefer it to the sideways glances (or outright stares). I believe that we are taught to avoid the unusual, such as people with a disability. Kids will freely ask me questions and once the questions have been answered, move on to other things. It’s the parents who drive me crazy — they rush over, hush their children, and apologize profusely. That only teaches stigma.

Accessibility is another kettle of fish altogether. Here, I usually get a little ranty (in a polite Canadian way, naturally) and start citing the laws that protect the rights of people with disabilities to participate on an equal basis. I try not to direct my ire at individuals, but write letters to corporations suggesting that they are missing out on a large number of customers (for instance). I might also blog about it. It can be a very effective form of advocacy, especially when coupled with an offer to meet and show them the reality of the lack of access.

Cathy asked me to write about how I share my RA outside of the online community, without it taking over my life. Out there in the real world I do tend to focus on just plain living my life. Spending time with friends, doing my banking and grocery shopping, photographing my city volunteering, taking walks with my beloved, and all the other things that make up a life.

Looking a bit deeper in these everyday pursuits reveals that they, too, can be advocacy. There are a lot of preconceived ideas about the dependence and inability of people who have disabilities. Participating in my community can challenge those stereotypes. The simple act of buying my own groceries or holding hands with my partner can make people think beyond what they think someone in a wheelchair can or should do. It usually results in some surprised, even astounded, looks. Some days I mind, other days it makes me laugh, knowing that I just blew someone’s mind simply by living my life.