Negative comments about disability are all too common. So, we wanted to turn it on it’s head by asking one of our regular writers, Lorraine Howard who has Spinal Muscular Atrophy (SMA), to round up the positives of disability and SMA.
1. SMA family
As I am sure is the case for many types of disability, the SMA world is like a family. Our family includes SMA children, teenagers, parents of those with SMA and of course the adults with the condition, all connected through social media and SMA.
I’m fairly new to the SMA family, but already I am meeting and chatting to some amazing people. Knowing that you can connect with others is important – being able to share stories, ask for advice and generally know you’re not alone.
If you have a disability, you’ll have determination, too. It can be a struggle every single day, but we put that aside and get on with it. Nothing stops us from doing what we want to do in life.
It’s about knowing how to look after yourself, and every day we’re learning. Often, as well as having our own jobs, homes and family life, we co-ordinate with and arrange PAs, which can be like running a little business. Many of us are also parents as well, and for me, becoming a mum has been my proudest moment.
Some of us drive, even those weak from SMA drive huge cars, which amazes me – I think it’s time I thought about driving after being so inspired by others. And, if we can find suitable accessible accommodation, then what is stopping us from seeing the world?
Too many uneducated people think disability equals unintelligence. It doesn’t. We can be very bright, just like anyone else. We can do well at school, college, university and can have great careers. Just because our bodies are weak it doesn’t our brains are as well.
I can’t deny that it’s sometimes frustrating. Often we want to do something but our bodies won’t let us. But that just means we have to learn to adapt, and that’s an great sign of skill and intelligence.
4. Our unique body
Our bodies are unique, and that isn’t a bad thing. People with SMA, and many other disabilities, have distinctive features. For us it’s our oversized heads that are slightly out of proportion to our bodies. Our very thin legs and arms with squidgy, chubby hands and fingers, and the cute way our hands bend outwards.
We then have our ‘Buddha Belly’ that protrudes to one side or the other because of the way we sit due to our scoliosis. And let’s not forget the way the corner of our mouths follows our head when we are trying to look to the side or behind us. I’m always affectionately laughed at when I do my ‘SMA Face’.
Everyone these days wants to be ‘normal’. But why? And who says what’s beautiful either? I say celebrate what you have, every last quirky inch of it.
Everyone with SMA I’ve known seems to have great soft skin that would make the most well-paid models jealous. I don’t think I’ve seen one SMA person who looks older than their years, and many that look younger.
We inspire people. Without even trying we show the world that we make the most of our lives and what we have. Maybe it’s because our often happy-go-lucky nature makes people look at themselves in a more positive light.
And this positivity is great for children, disabled or not. It influences them and makes them appreciate their own physical health.
We seem to be very creative. I have seen a huge range of disabled artists that have a great flare for art in all different areas, from fashion to photography. Maybe it’s because we can’t use our bodies in a physical way, so our creative minds take over so much more. It’s our outlet, and one that can produce incredibly beautiful results.
Having a disability does have its perks. We can go to the cinema with a friend for half the price (if you have a CEA card). Two of you can go to a concert or a show for half the price as you can get a free carer rate at most venues. Plus, you often get a great view of the stage from the accessible area.
Being able to park easily with your Blue Badge makes life easier, as does being able to have a Bus Pass for free. Also, our flirty, cheeky sense of humour gets us by – who can say no to us?!
We have the most amazing sense of humour – we’re very clever and witty at times. I don’t think I’ve come across someone with SMA that isn’t funny. And who doesn’t love making others laugh and brightening up their day. I keep saying we should have an SMA Reality Show as we are very amusing. Maybe one day there will be ‘SMA Housewives’ or ‘The only way is SMA’, who knows!
Lastly, we are happy people! I mean, what is there to be down about? Disabilities can be cool and we are very often the loveliest people with lovely people in our lives.
By Lorraine Howard