Hi, I’m Erin. I have lived with Juvenile Rheumatoid Arthritis since 1973. I was born in the United States and obtained a Master of Science degree in Marriage and Family Therapy there in 1998. In 1999 I married a Kiwi and moved to New Zealand. In the past I’ve worked as a counsellor and an administrator at a DHB in NZ. Currently, I dabble in copy editing and proofreading, water exercise and volunteer work. I live with my husband and three cats.
I was walking to my car when I dropped my keys. I stood staring at them. I was alone on the large expanse of grass at university. No one was around to help. Now what?
I was only seven years old when I was diagnosed with juvenile rheumatoid arthritis (JIA). The disease was aggressive and all my joints were soon involved. I became more physically limited as the damage rolled throughout my body. Thanks to excellent intensive treatment with drugs, physiotherapy and occupational therapy I maintained my mobility. However, life was much harder now that I couldn’t reach below my knee or above my head. I couldn’t do heaps of stuff I’d done before, yet my parents were determined that this wouldn’t disadvantage me.
Despite the physical difficulty and pain, I was expected to attend school regularly and go to church on Sundays. I often encountered barriers in attempting to do these ordinary, simple things. A high curb meant that I had to walk farther to find a flat access point. A dropped book had to be picked up by someone else. I soon discovered that some people weren’t particularly happy to be asked for help. One man didn’t believe that I couldn’t pick something up! Why would I lie? Couldn’t he see my misshapen joints? These experiences, plus my parents’ determination that I have access to the same things as other kids encouraged me to find different ways to work around barriers.
I became good at picking things up with my toes. This was tricky though because I couldn’t bring my foot to my hand. So, I would drop what I had picked up onto a nearby raised surface, like the foot-well of a car or a bench. Then I could reach it with my hands. I also became quite skilled at using long implements, like a pen or stick, to push or pull things off of a high shelf. This required good hand-eye coordination because at the grocery store I had to catch whatever I nudged off the shelf. I used a long-handled scrubber to wash my hair. That eventually gave way to a nylon exfoliating cloth which offered more flexibility around the top of my head.
I found that I actually liked the challenge of figuring out ways to overcome physical challenges. Only using accessible file drawers at work wasn’t a problem for anyone else. Getting a bookcase unit to hold forms used to make up packs of information in the office was a cheap and easy solution and allowed me to help my colleagues more.
These ideas and all of the available adaptive equipment (sock cone, dressing stick, long-handled comb, raised toilet seat, etc.) have enabled me to style my hair, work, study, and live a full life. I encountered people along the way who seemed sure that I was disadvantaged and wouldn’t be able to achieve what I have. I honestly never understood their viewpoint. I just moved on and lived life on my own terms. Everyone has the right to do that.
…I kicked the keys the last few feet. If I could lean against the wall, pick the keys up with my toes, drop them into my shoe, lean the shoe up against the wall and reach down to get it I’d have my keys. That should only take a few minutes… right? Ten minutes later, with gravel stuck in my nylons, I finally reached the shoe. Success! I had my keys!