I Get By With a Little Help From My Friends

My friends had known about my struggle to have independence and had sympathised when I was turned down for Disability Living Allowance (wrongly turned down: I've since, thank goodness, been accepted). But they went further than just supporting me on the internet. They did something about it.
|

Hello, I'm Penelope Friday. I am a disabled mother: I've had a diagnosis of moderate to severe ME/CFS for 22 years, and a diagnosis of fibromyalgia for 1 day (yes, really. No thank you, in the nicest possible way, I don't want to know what you advise for either of them). I have a very wonderful son of nine, but when he was a pre-schooler, I had a horrendous amount of trouble getting him to pre-school. I have been reminded of this recently because my car - fairly vital when you can barely walk - has unfortunately gone the way of all things mechanical. And I'm back to relying on... well, that little (or, in my case, big) bit of help from my friends.

In the past when I didn't have a car, my options were (a) not to send my son to pre-school (and he loved pre-school), or (b) phone my parents and ask them to drive ten miles out of their way, in order to give me a lift from one side of my village to the other (annoying and inconvenient for them, and humiliating for me as a 30-something woman unable to manage without parental support). Obviously, now he's older, not sending him to school (since I don't home-school) is not actually legal, and we're fortunate enough that my son also loves his Primary school. But getting him there without a car and (as we tend to term it in our household) "without legs" would be a trial.

Except it isn't, because I have a mobility scooter (known more regularly as "the dalek"). And how did I come into possession of this most wonderful device? Well, it's thanks to the internet. We've all heard horror stories of 'trolls' surfing the internet ready to hurt or attack anyone online. Or people pretending to be someone they aren't, for a whole raft of nefarious reasons. But that's not the whole story. As someone who is usually housebound, the internet has been my lifeline to the world outside - to people. Many of the people I consider my closest friends are folk I've never met.

When I used to talk about "my friends," meaning these people I knew through the internet, my family and certain other people used to smile and indulge me in my love for what they generally referred to as "Pen's imaginary friends". They don't laugh now - not after a group of these 'imaginary' people got together (and again I mean virtually) in order to raise money to allow me to get a mobility scooter. My friends had known about my struggle to have independence and had sympathised when I was turned down for Disability Living Allowance (wrongly turned down: I've since, thank goodness, been accepted). But they went further than just supporting me on the internet. They did something about it. Something amazing. They saw one way in which they could make an incredible difference to my life - and they went ahead and did it.

Why am I writing about this? Well, when you're disabled, and you're fighting every day to get reasonable and equal treatment (especially in the current climate), it's sometimes tempting to believe that the world is a horrible place and that everyone is out to get you - or at any rate, even if people aren't trying to make your life hard deliberately, the world is set up so that it's hard to get a decent break. The news tends not to help: we are bombarded with stories of violence and disaster. Good news rarely gets a look in. My life has been changed by the understanding and kindness of a group of people, most of whom I have never even spoken to on the phone, let alone met. When I am angry - and I do get angry - about the lack of understanding people with disabilities meet almost everywhere, I remember that there are people out there who not only understand what we're going through, but care enough to change it.

As well as being a disabled mother, I'm also a writer and I've written publicly about problems and issues that I face as a disabled woman. It's important to point these things out, and to work towards changing things for the better. But it's also important to acknowledge all the good things, too. To remind ourselves that things can change - and that there are people who care about making these changes, and who are prepared not only to talk the talk but also to mobility scooter the walk (if you'll excuse the turn of phrase). I'm disabled. I face many challenges in my life. But my disability has also been responsible for making me the recipient of the greatest act of kindness and love that I've ever experienced. And you know what? That is important too.