Some legacy

An article I wrote for the Times in September last year… my cafe dream hasn’t quite taken off but neither I am afraid  has much else…

Remember they can’t all be Paralympians

I have always loved the Olympics. I watched through the night as a child and believed one day I too could run like the wind. So when they came to my home town, I cried when Mo Farah took gold and despaired when Mark Cavendish missed his medal. I vowed it wasn’t too late to put on my running shoes, dust off my bike, swim open water in the ponds — but resolutions don’t make champions. The Paralympics were something else. I had excited texts from friends, exalting in the atmosphere and soaking up the positivity. Many left the stadium talking of the impact of the Paralympics, saying it had changed their perception of disabled people and that there must be a long-lasting legacy in our society. Sadly, my family could not join them at the Games, since wheelchair users could only have one person with them and my daughter — who has profound and multiple disabilities — needs two on such expeditions. But I desperately hope these optimists are proved right. I want the world to change from a place where my daughter lives in the shadows of society, relying on me to fight for her most basic human rights. I want that positive energy harnessed and used to make things better not just for my daughter but for all the ordinary people who happen to be in wheelchairs but will never be superhuman, in the way that I will never be an Olympian.

A few nights ago in my kitchen, I asked my daughter’s carers what they admired about her. A long list of adjectives flowed: they said she was adventurous, strong, easy-going, happy, funny, sweet, trusting, strong-minded and brave. Of course, I think she is all that and more; I am her mother. Such a shame she is not seen this way by society. Otherwise, how is it possible that I have on the table beside us a blank timetable that represents what is available when she leaves school next June? I remember all too painfully how five years ago my daughter was desperately ill; we were warned to prepare for her death. But she fought back — and at that point we sat down with her social workers and asked what was available locally when she leaves school. “Nothing,” was the stark reply. We had nursed her through the darkest days only to be told she has no future unless she leaves home and the community she has known all her life for a residential college. After 18 years fighting for a disabled child, there is the terrible realisation that there is even less support for disabled adults. We live in the heart of London, the city on display to the world this summer. It is a vibrant, multicultural, diverse community filled with some of the most open-minded people on the planet. And yet living in its midst is my daughter and many thousands like her who face no future.

There is almost no supported housing, leaving more and more people to report local authorities illegally refusing to house them. We have an underground system trapped by its Victorian past and bus drivers so bound by health and safety restrictions they will only let one wheelchair user on at a time — and that is if the ramp is working. Imagine the outcry if similar restrictions applied to members of other minorities.

There are few education or employment opportunities that give meaning and fulfilment to young people’s lives. I recently worked with a charity called Housing Options looking at examples of good practice for young people in London. In the end, we had to spread our search beyond the capital, such was the paucity of good facilities. The default position is to send young people out of London to residential colleges as far away as Manchester. How does this give young disabled people — all those with no hope of being Paralympians — something to aspire to in their lives?

Only one thing is certain: they have no choice in their future. Britain has pushed disabled people to the fringes, leaving them isolated, their services fragmented at best. The Paralympics briefly gave them a voice — but are we really listening? It is not just about help, but inclusion and the chance to live ordinary lives. Recently a mother told me that one of her greatest wishes for her ten-year-old daughter was that she too would be invited to birthday parties like her brother and sister. Studies show the vast majority of people have never had a disabled person in their house, met them at a pub, still less talked to them over the photocopier in the office. Besides, many Britons would not know what to say if they did, since fear and trepidation causes confusion. Caroline Tomlinson, an inspirational mother and activist, set up a company in Wigan called My Life to breach this social divide. Part of this involves a small commercial enterprise selling hanging baskets and tote bags. Each transaction is important not just to raise money but because it is accompanied by the sort of human interaction most of us take for granted; each time, it moves a disabled person closer to the community they live in.

Like her, dismayed by the lack of facilities and integration, I am now planning a café and arts centre to bring children such as my daughter into the community. Even such small steps could start to change society. Employers could make more moves to bring disabled people in from the cold; transport companies could offer more assistance. But to really change our country will take more than a fleeting admiration for dedicated athletes. It will take a sea change in attitudes alongside Olympian determination and investment to create equality for disabled people to lead ordinary lives.

My daughter joins in everything she can. She does yoga, trampolining, swimming and dance; she goes to concerts, cafés and theatres. But she does all these with her carers or family; all too often, she is only in the company of other disabled people or isolated on her own. Even classes designed specially for disabled people can exclude her with narrow doors, or lack of changing rooms and hoists.

We keep on going. Like any parents, we resolve to make her life as good as it can be. But if all those that walked out of the Olympic Park feeling that the landscape had changed, or watched on television cheering on those medal-winners, retained that spirit of optimism and mood of inclusivity, then our lives might just be easier and, more importantly, our daughter might have a future.