A couple of weeks ago I decided to take my daughter Daisy to an inclusive Dance & Singing workshop at the Royal Festival Hall on the Southbank in London. I had seen it advertised the day before and thought it would be a fun thing for us to do together on the Saturday morning.
We live in London, we have an amazing mass transport system, except, of course, if you are disabled like Daisy, then getting from A to B involves a lot more planning and preparation.
First stop was to drive just under 2 miles to Wimbledon. Raynes Park station is our nearest overground but unfortunately the platform is only accessible for wheelchairs in one direction. We can only travel into London from Raynes Park but cannot get off at Raynes Park on the return journey as there is a big flight of stairs and no lift. When we got to Wimbledon we discovered that there were no trains running, just a replacement bus service and none of these were accessible for wheelchairs.
I phoned the train company and was told that I should have pre-booked an accessible transfer through them the day before. Yes, everyone else could make spontaneous journeys on a Saturday (we are talking about suburban train services that run every 10 minutes normally after all), but anyone with access needs had to plan or find another way to make their journey. I drove to the Southbank that day, hardly boosting my green credentials but at least Daisy got to do something that other 11 year old girls take for granted, go to a dance class
This sums up life when you have a disability. Life becomes slower, you have to plan, you have to accept that you will be inconvenienced, you will accept that you will probably end up paying more to do things others take for granted. I have example after example of situations that should not happen - not being able to attend a Singalonga Frozen Screening at a Cinema with Daisy because it had no lift, having to use the kitchen service lift next to the bins in a 5 star central London hotel where we were attending a charity ball because there was no main guest lift to the basement ballroom, having to change Daisy's stoma bag and catheter while she lay on my coat on the dirty floor of a toilet in a central London toyshop. This is all in London, where there is a higher concentration of people with disabilities, what is it like in the rest of the UK?
Today (24th March 2016) the Lords Select Committee has published its report and findings following an investigation of the impact of the 2010 Equality Act on Disabled people. The results are shocking but not surprising. The Equality act was intended to harmonise all discrimination law across nine protected groups, but in reality, by lumping the needs of people with disabilities into these groups their rights have been diluted and lost. The committee goes as far as saying that Disabled people should not have been included when this act was drawn up but it's too late to anything about that now.
Instead the report makes it very clear how people with disabilities are being let down across every spectrum of life. I know that, my friends in the deaf & disability community know that, but thank goodness some people in positions of power are pointing out that it is simply unacceptable that day after day a section of society in the UK is unable to access buildings, take transport, attend events, access facilities that everyone else takes for granted.
Despite all the good words of the act and policies the reality of life is so different. Reasonable adjustments are not being made and all too often people with disabilities are being seen as a cost burden. This quote from the report sums it up:
"The Government bears the ultimate responsibility for enabling disabled people to participate in society on equal terms, and we believe it is simply not discharging that responsibility. Not only has the Government dragged its heels in bringing long-standing provisions of the Act into force, such as those requiring taxi drivers to take passengers in wheelchairs, but has in fact repealed some provisions which had protected disabled people. Intended to reduce the regulatory burden on business, the reality has been an increase in the burden on disabled people"
The report states very directly that things need to change, that it simply unacceptable that in all areas of life from communication to accessibility, the needs of people with disabilities are not being considered. But how can things change when people with disabilities are constantly seen as a cost to society, to be pitied, a burden even? The recent budget was a glaring example - tax breaks for business balanced against cuts to personal independence payments.
Things are just so much more complicated when you have a disability, everything takes much more planning and often involves more money. Simple things that people take for granted, getting on and off a train, going to a gig, using the lavatory, can become onerous tasks.
I want a better world for my children when they grow up, I want Daisy to be able to go out and about and have fun experiences, I want bus drivers to have autism awareness training so when a problem happens they recognise my son is having a melt down and know what to do rather than calling the police. I want people with disabilities to be treated as people, not an inconvenience. How is this going to happen?
By making sure that the needs of people with disabilities are on every agenda - in councils, schools, clubs, sports grounds, everywhere. We all need to question when things are wrong, by we I mean everyone, not just people with disabilities, not just their carers, so not being able to access a platform on my local station is everyone's issue, not just mine or Daisy's.
I have said it over and over, we are all a car crash, an illness, a gene mutation away from disability, it is all our responsibility to make sure that we are doing the best we can for everyone because we never know when we will be affected.
I am so pleased that Baroness Deech and the members of the Lords who sat on the committee have come out with such an honest, hard hitting report on the reality of life for someone with a Disability in the UK. Now it is up to the Government to take on board the recommendations of the report. The Committee wants to see changes right at the top of Government and is calling for the Minister for Disabled People to be given a place on the Cabinet's Social Justice Committee, what better sign would this be that they are taking the issue of Disability rights seriously rather than consigning it to a departmental backwater?.
"It's time to reverse the attitude that disabled people are an afterthought. Many of the changes we suggest are simple and do not require legislation. We hope the Government will implement them quickly"
I hope for the sake of my daughter and the thousands like her who just want the chance to do things everyone else takes for granted, they do.
This post first appeared in my blog www.wasthisintheplan.com