Pretty much my whole life I’ve done arts and crafts — origami, drawing, sewing, painting. My grandfather’s an artist on my mom’s side and my father has a Masters in fine arts, so he always encouraged me to do art. We always made Christmas cards — we made them. All our Halloween costumes too. As a kid, I’d say, I’m bored! And my dad would just hand me paints and a canvas and put a vase of flowers in front of me and say, paint this, draw this.
This energy is partially why I bring a creative approach to the access tools I use. Being born with a disability that has evolved or progressed in my lifetime, I’ve had to adapt every moment.
Luckily, both my parents are pretty creative and willing to do more than just provide the basics.
I started as a fairly average kid walking but progressed into using crutches to walk and then to using a wheelchair. Beside the usual medical equipment I had to purchase, we wanted to find a way for me to open and close the doors, curtains and drawers. I find these potential solutions and discoveries a fun adventure and something I like doing.
I usually find inspiration for my projects from other people who have done some living adaptation themselves and take one small part that could work for me but change it to solve my issue. Sometimes I see products that are very expensive and make them a different version for myself.
A rope to close doors
One thing I used to use was a string on my door to close it, but once I got a service dog I upgraded it to a rope. I hadn’t realized how much easier it is for me to use. I not only use this on the front door, and other rooms in the house but also the fridge doors and drawers to operate them. Yes, my dog can open and close these items for me, but I love that I can do it too! And that it saves me some of my wrist pain and exhaustion.
Being that I’m only 3’2” tall, I couldn’t open and close the curtains. So I took a long PVC pipe (that can be found at any hardware plumbing supply store) and tied a string to it for the fabric to stay with the pipe. It is not the prettiest rod, but it is functional. One day I will replace the curtain and rod with something nicer. I remembered in hotels they have a stick and thought, Why can’t I do this at home? So this was born!
This sink is the main sink in the kitchen. Both my 6’ brother and 3’ myself use it. We took the doors off below the sink for my wheelchair’s footrest to go under, and we put the faucet on the side front instead of the back. I love that I can easily reach it, but my parents love that they can now put a big bucket on the floor and fill it up. They say it doesn’t make much sense for the faucet to be in the back. We all love it.
As life goes on, I am continually having to find new ways to adapt to my living situation. The sink is my latest adaptation version — many years before, I had a whole separate kitchen setup that worked for me, but as an adult I found myself needing a larger sink. So this, like my other adaptations, was born.
Luckily for me, my father does construction for a living and we are able to come up with new inventions that work for me. They are not going to work for everyone else who uses a wheelchair or a dwarf like me, but they do represent ways to take ideas from and put your spin on it.
Life is a work in progress, especially when you have a disability that is changing your own abilities overtime again and again. I hope every invention I’ve made is permanent, but I also know they’re not. As I age I learn to enjoy these tools for the amount of time I find them helpful.
Maria McClellan is the founder and president of Morquio Community and has Morquio syndrome.