For Spinal Muscular Atrophy Awareness Week, Trailblazer Michaela Hollywood blogs about her life with SMA and why society needs to be fully inclusive for young disabled people.
Life is complicated and sometimes unfair. That’s just life. But when you live with a seldom heard of condition, those complexities of life become much more profound and noticeable.
I was diagnosed with spinal muscular atrophy type 2 when I was 8 months old. I was diagnosed earlier than most of us are in the UK with my type as my sister also had the same diagnosis. Called SMA for short, this genetic condition robs those of us living with it of our ability to walk and sit, and in more severe cases it takes away the ability to eat, breathe, talk and smile. I’m fairly middle of the road, so I have a broad mix of symptoms.
I was diagnosed the same year as scientists found the gene that causes SMA, and as such in those 25 years huge leaps forward have happened. Medicine has the capability to help us live longer lives. The 9 year age gap between me and my sister Martina undoubtedly was the difference that meant we lost her when she was 14 years old.
As callous and cold as living with SMA can be on its own, the main reason I face barriers to life is the attitude of society towards disability.
Growing up with a disability exposed me to many things. People will ask my mum or carer if I’d like sugar in my tea, over asking me without meaning to take my voice away. Even simple assumptions that because I’m in a wheelchair I must need to use a day centre can damage your self esteem when you’re a teenager. But all of this is usually well meaning people trying to understand, but aren’t sure how.
Having to explain over and over that I’m a Masters student can be fun, but it’d be amazing if more people would acknowledge that young disabled people like me can go to university and excel in our fields – whether that is academic or not.
The general perceptions of disability to the public also affects where we can go and what we can do. I’ve had twenty-something friends who are disabled be given a children’s menu and colouring pens at restaurants. But that’s if you can even get into the building, as many still aren’t accessible and don’t have ramps or working lifts.
Many huge strides forward have been taken, but the fact remains that the law in the UK considers prams and buggies to be a priority in the only accessible spot on the bus. Rosa Parks – the amazing woman that she was – fought to sit wherever she would like to on the bus.
The disabled community almost 60 years on are fighting to just get on the bus at all – and many of us are parents too.
Perhaps the most disturbing part of the misinformed perceptions and knowledge of disability has only just begun to come to the public eye. The mother of an autistic child who was having a meltdown at The King and I on Broadway received taunts and protests from the audience who didn’t want their evening disrupted.
I’ve had complaints about a light flashing on my wheelchair, while others have even been asked to leave the cinema because customers were complaining that the ventilator that keeps them alive is making too much noise. Why have we become a society so intolerant of inclusion? This is the most upsetting aspect of my life, as I never know when a disgruntled member of the public will complain about something that either keeps me alive, or helps me live an inclusive life with the rest of society.
Living with SMA has presented me with many unique opportunities. But society takes more away from me than my SMA has – as callous as it can be sometimes.
While I’d like to be healthier, I certainly don’t feel like I need to be fixed. But society has to be fixed. In the UK people with a disability have only been living inclusively in mainstream society for around 40 years. We’re making huge strides but we have a long way to go. I look forward to the day when disability just becomes part of society and isn’t news.
By Michaela Hollywood
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