Last week there was a post on one of the Arthrogryposis groups on Facebook on how parents should avoid at all cost getting their kids a power wheelchair if they wanted their kids to be idependent later in life. If you were one of the lucky ones not to read it, be thankful for your own peace of mind... This person put all us AMCers in the same bag as if AMC had only one way to be treated and there weren't 400+ types of it. It is really easy to judge when you are not in someone else´s shoes, right? Well, I'm not here to bitch and moan about that post, I am here to share with you how I move around in the present and my own journey on how my power-manual wheelchairs & canes have helped with my freedom. Like many AMCers I started walking with braces, my shiny lovely things that not only helped me be the coolest kid in kinder but also gave me the support my legs needed.I used them until I was 7 years old.
After them I didn't use any kind of aid to walk, my legs were getting stronger and stronger and by age 11 I was not only walking around for blocks and blocks but also dancing "all night long" in my first parties.
After this I enjoyed many years of freedom, I not only achieved doing my personal daily things but, I had a very active life with a very active able-bodied group of friends. I went to school, did stairs and all kind of surfaces, had a lot or a few (depends on your point of view) falls, but I kept going.
Around age 22 I was at my best, living abroad, in my own apartment, walking long distances without a problem, but it all soon changed. Around 24 I started having very bad pains in my knees, and that kept me from walking the same distances I used to, I didn´t want to do much. I, a very active person, was passing on invitations to parties, stopped wondering around when I traveled, I honestly didn't want to leave the block or even the comfort of my house. I was in such pain that guess what? My aching body was forcing my active personality into laziness. Then something happened, due to those pains I had a surgery to shorten a tendon around my knee to give it more support. I was in a rented wheelchair during my recovery, that lasted around 6 months like any other of my recoveries while I relearned to walk. When I went back to my normal and I was supposed to return the wheelchair, it didn´t happen. I kept the chair, I excused myself saying things like: "I didn't have the time to go and return it". But honestly, I was enjoying so much the freedom that said chair was giving me back. I could keep up with my day to day to day chores, I could keep up with my social life, I could keep up with life in general. I would walk when I wanted to and sit when I needed to. And after 6 years of having a rented wheelchair ( because I refused to admit that I needed to have one permanently) my mom did what she does best and made a decision for me and my body, and my 30th birthday present from her was my first ever wheelchair.
It all went from there, a few years later my mother in law made me try a cane and bought it for me, my lovely present not only helped me when I was walking alone to have more stability and reduced my falls, it helped me with stairs that didn't have railings and also made me look like a rock star as it was a super cool cane! I now own three canes that I use for when I travel alone or have a painful day, an AWESOME power wheelchair that I use for long walks like any other person would use a bike and a manual wheelchair that I use when it´s difficult to transport the power one... Oh yeah, and let's not forget every now a then I jump on other peoples mobility aids when all the above fails.
As you can see making the decision of using different aids in my daily life has made me far from lazy, I can keep up with life, I can be independent in my own way, and my decisions are based on my mood rather than how my body is feeling. Using aids has not made me more disabled, au contraire, it has made me more abled. I can now jump in my power wheelchair and "walk" through a park on way to a work meeting instead of having to take a taxi or drive, it has given me the opportunity to use my cane on steps that don´t have railings and do so without the worry of falling down and breaking a leg (as has happened twice before), it has given me the opportunity of enjoying the cities I visit without worrying about walking distances and having to miss something I really want to see because my body cant keep up with my mind, It has given me the opportunity of using a chair on boring Saturday food shopping trip so I can enjoy my pain free legs on my Saturday night out with friends.
So... I´m not going to tell you to make the decision to put your kid in a chair or not. I'm just showing you that if you decide to, your kid could have an amazingly independent life, as much as if you keep him/her away from them. Whatever works for your kid is the best you can do for them. Just follow your heart.
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