In the seventeen years since I was paralysed in a car crash I have spent days, weeks and even years trapped at home for health reasons. And I am not the only one. For thousands of people with physical or mental disabilities, as well as long term health conditions, this is a part of our lived experience.
Because of my paralysis I use a wheelchair, and a few years ago, after getting a splinter in my right bum cheek which then turned into an abscess, I developed a wound in an area that I would usually sit on, so I had to remain lying prone for a prolonged period of time in order for it to heal. I was on bed rest on and off for three years.
Since then I have had to return to convalesce every now and again when the scar of the area is irritated and needs rest, passing days, weeks or months back on my stomach. As my life grinds dramatically to a halt and I retreat to my home to mend, the world continues on without me and I have had to find ways to keep up doing all I can to avoid being left behind. These are my most testing times. Trying to maintain a job, keep relationships and keep mentally and physically well is extremely difficult when you are unable to leave the house.
But this is what life can be like for many people with disabilities. Self isolating by choice is a privilege.
Everyday this situation is evolving and what is fascinating to observe from a disabled persons perspective is that more and more people are now becoming disabled by this situation. As able bodied people are forced to stay at home and to socially distance themselves, our governments are having to respond by quickly adapting the world in which we live. This new world needs to accommodate people working from home, with flexible working hours, it needs to support care workers, provide increased statutory sick pay and benefits to support those in need. These are all measures disabled people’s organisations have been campaigning for for decades. Now that the disabled lived experience is a universal one we are finally getting our needs met.
As businesses grapple to find the solutions on how best to provide goods and services for the vulnerable, new processes and systems are needed.
One of the more interesting consequences of this situation is that for the first time many people are having to disclose their disability in order for them to get priority over others. This week those of us who are vulnerable will be getting a reminder we are in danger from the postman. It’s like getting a letter from Hogwarts to say you have magical powers, but they aren’t the type you would want.
Retailers urgently need for ways to identify their customers with needs so they can reach them but as yet, their efforts are not working. Allocated shopping hours for the disabled and vulnerable aren’t working for example as people simply take advantage of the system. In these times, everyone considers themselves a priority so they can hoard toilet rolls guilt free.
But the vulnerable who rely on many of the products and systems the strong previously for granted are now fighting for survival. More than ever we need equal access to information and equal access to health care and to treat each others needs with respect. Let’s hope the urgent changes we need will happen not only soon but will make the impact we need and will ultimately last.
Another interesting consequence of quarantine is that when you return to your life, it will not be as you know it. In fact, I can promise you, nothing will be the same again. The appreciation you will have for your freedom and health will fill you with such deep gratitude that you will find yourself doing so many wonderful and important bucket-list things that you might not recognise yourself. I for one got a full body tattoo, auditioned to present the Paralympics live on Channel 4 (with NO previous experience), skydived, learned to scuba-dive, started my own business and amongst many other crazy things, planned an adventure around the world on my motorbike. I aimed to be the first to do the route solo as a disabled woman.
The trip was meant to be starting in exactly a months time but has had to be postponed of course. But my adventurist spirit has forced open another door as the one to my dream closes. Guidelines have outlined the need for us to get fresh air in order to maintain our mental wellbeing, so when I am venturing outside, instead of taking a walk or bike ride I am putting on my helmet and gloves and riding my motorbike. This has brought unprecedented (surely word of the year?) joys and opportunities. I am not only able to blow away the cobwebs for an hour each day from the safety of my bike, I am also able to offer help to my community by doing deliveries and errands around Sussex.
Who knows what tomorrow will bring, I have never wanted to know the future anyway, because if being paralysed has taught me anything it is that even when the worst happens, you can find yourself a better, kinder and happier person for it.