I thought I knew all about disability

For thirteen years, since my younger son was formally diagnosed with severe autism, I have struggled to come to terms with the system, to access the support he deserves.  I fought for a place in a specialist school, I successfully obtained Disability Living Allowance for him, I joined a national charity and used my professional skills to help set up local services.

Later I became the primary carer of a family member with mental health problems, who is thankfully now recovered. I fought the system again, this time from a different perspective and with less success.

As paid up members of the sandwich generation it was perhaps inevitable that caring for our son would at some time clash with the needs of elderly parents. Most recently I have found myself drafting an application for Attendance Allowance, researching wide and comfortable shoes, looking for memory aids and considering support and home safety for people with dementia. I’ve had to change my mindset again.

Moving on from caring

In the midst of all this I found my own physical ability diminishing. I started to walk slowly like an old woman and had a couple of falls. My hands became clumsy and weaker; my eyes started to temporarily give trouble. Eventually, last year, I was diagnosed with Multiple Sclerosis.

I now find myself envying the neighbour who sails up to the shops on a mobility scooter, though despite pain I’m not ready to give in to that quite yet.But last week I invested in my first piece of special equipment, a perching stool to use when cooking and undertaking other household tasks. It’s a whole new world, but looking at disability websites I’m glad to find there are so many things out there to offer practical day to day assistance, if you know where to find them.

Discovering new worlds

I entered a parallel universe when my son was diagnosed and now I’ve had to enter another following my own diagnosis. I’ve evolved from an accountant to a disability charity worker to a writer and I continue to reinvent myself as I come to terms with my physical limitations. It’s a whole new journey and I hope that disability charities and retailers such as the Disabled Shop will accompany my every step, showing me ways to treat my diagnosis as an inconvenience rather than the end of the world.