It's Spinal Muscular Atrophy Awareness Week, and as an adult with SMA type 2, to me this really means... not much.
But this year, I've been asked to write about it, and it really struck me that indifference was probably not what the campaign set out to achieve, and that it was a really weird starting point for my notes. Surprisingly, after seeking a second opinion from some great guys and girls, I've found that SMA Awareness Week isn't generally celebrated by adults with SMA.
This paradox might seem illogical, until you consider that a large part of the medical research, support and awareness raising is focussed on children. And who can blame the researchers and awareness raisers for this? Children born with SMA type 2 are typically bright as a button and frankly adorable, with medical and support needs that can change quickly and need to be responded to quickly.
Whilst still in infancy, children with SMA type 2 will lose the ability to walk or stand and will need an electric wheelchair. As the child grows, their muscles will continue to weaken, meaning they will find it more difficult to move their arms and to hold themselves upright in a seated position. Good wheelchair seating and in many cases corrective surgery can help to prevent leaning sideways in their wheelchair. Lightweight equipment and alternative computer controls can allow them to continue doing what they love for as long as possible. Coughs and chest infections become Public Enemy Number 1, as they can be very difficult for lungs with weaker muscles to clear. Early treatment and a good Respiratory Consultant can help, but not catching the cough in first place is the best option.
I know all this because I have lived it. I am an antibacterial hand gel ninja, ever-ready to offer it to anyone who coughs within 5 feet of me. My wheelchair is a standard NHS supply model with a compass strapped to the front and sparkles on the wheels. I've lost count of the number of bits of beautiful assistive technology I use; this blog was typed using a program called Dasher, which has been known to mesmerise colleagues with its colours and patterns. It's completely natural to me, as I've been using it for 10 years. Many of the adaptations I've made to how I do things now seem more natural than the more conventional methods. I can't imagine using a keyboard again, as it was always a bit of an effort for me way back when. My typing program is very intuitive, fluid, and enjoyable to use.
Learning to do things differently is an important part of living with SMA, and with many tasks changing the how does not necessarily change the result. To see this in action, take two pieces of bubble-wrap. Pop one, pop every single satisfying little bubble, one by one. Give the other piece to anyone you know with an electric wheelchair, and place it on a laminate floor or pavement about a metre in front of them. Move out of the way and watch what happens. I was never able to pop bubble-wrap as a child; my fingers never had the strength. However, as an adult, I realised it would most certainly go pop when wheeled over.
This is the type of support that adults with SMA type 2 need over and above medical research. Rather than spend years looking for ways to restore lost muscle, or perhaps as well as, our Christmas list would include finding better ways of working with the muscles we have, for example:
- More supportive wheelchairs with easier controls, and screws that don't fall off in the car leaving you thinking "Where does this go?" and "I really hope that's not important..." Seriously, I have a box of the things.
- Shops, restaurants, pubs, theatres and cafés that have room to swing a wheelchair, and just don't have steps. I'll come back to your establishment with all my friends and family, if you could just let me in the door. And if you own a second-hand bookshop, no matter how close together you put the bookshelves, I will find a way in.
- Assistive technology that's actually affordable - I've seen cheaper cars.
- Opportunities to work with engineers, researchers, support organisations and tech developers to help generate new ideas and test their creations. There's an old disability rights battle cry that echoes this: "Nothing about us without us."
Does all this mean that all adults with SMA oppose the medical research into "the cure"? Far from it. The idea that future generations may be given a treatment to slow muscle loss is fantastic. SMA was one of the first neuromuscular conditions to have its genetic cause precisely identified, and the medical research that's happening right now shows a lot of promise. To find out more about all the different types of SMA, and the research happening right now, visit Muscular Dystrophy UK, SMA Support UK, and The SMA Trust.
It's SMA Awareness Week, so let's all consider our role in improving the rights of people with disabilities, promote progress in research, and pop some bubble-wrap.