By Simon Sansome
In 2018 I was coming to the end of university degree, I was the oldest person in the class by about 18 years so I didn’t really make many friends on the course, in fact I had more in common with the lecturers than the other students. I went from being newly disabled straight into university. For me it was a good way of obtaining an income as I could no longer work because of my disability but I also thought that studying journalism would be a good way of being self-employed.
So, after university I was trying to figure out what I was going to do and I came up with the idea of a podcast called ‘Amazing People’. We wanted to travel the world showing different disabilities in different communities to understand how it affects and how it translates around the world compared to the UK. However, as this was going to be a podcast with a budget of about £4,000 per podcast there was simply not enough money in the budget.
Ellis Palmer is a reporter at the BBC who is now a BBC producer at BBC World Service. We got together and we were going to be the presenters and producers of the show. We had a meeting with BBC but after about six weeks they turned it down.
Ellis had the idea of calling it ‘While Disabled’ he said calling it Amazing People was a bit patronising when they’re just people getting on with their lives and he had a good point.
Getting a little bit frustrated with the BBC (as this was a fantastic idea for a show) I came up with the idea of interviewing disabled celebrities around the UK, unfortunately again the BBC did not want to do this so I decided to pursue the idea by myself.
There were a few issues on doing a new podcast. I had never done a podcast before and, aside from my journalism course I had no real experience, however I started contacting celebrities with disabilities via social media, emailing agents to see if they would sit down with me for an hour or so and talk to me about their disability, I have to admit it got off to a shaky start.
People who I wanted to interview were the likes of Lost Voice Guy who had just won Britain’s Got Talent, The Governess from The Chase and film star Stephen Graham as we had both been diagnosed with dyslexia, but all three could not commit. Anne went into the jungle; Lost Voice Guy was booked up for a year following his win and Stephen was off filming a small film called The Irishman.
But then after doing more research and contacting more people I started to get yeses from celebrities which was fantastic. The problem was I have no idea who they were and, before my injury, I had never been interested.
In approaching different organisations for funding for the podcast what I found out was, the industry does not care about disability and celebrity disability. It appears they are only trying to meet a quota instead of having a passionate stance on diversity.
So, the question was how was I going to get people to pay attention to these peoples’ stories. It became apparent very quickly, this podcast was not about bravery it was not a story about how they are an inspiration, it was a story of them getting on with life.
The reason that people see these people as inspirational is because they have got no idea what it is like to be disabled and the things you have to do to get on with normal day-to-day living so it is not that they are inspirational it is that they just want to crack on with it.
So, with basically no money or studios for recording I decided that I would meet the celebrity either at their workplace, at a public venue or in their homes and what happened of course is the recording is absolutely awful.
My first interview for the show ‘While Disabled’ was Actor and TV presenter Adam Pearson.
Adam lives in London, I could not find a studio to record in, so I decided to do the interview at the Tate Modern.
The Tate Modern is probably the worst place for any recording, especially if you are creating a podcast. Because of the large open space there is echo’s, throughout the building and the massive amount of people in the background.
If you listen to the podcast you can hear children screaming, plates clattering, music playing, it was a completely unsuitable environment, but then I realised it was not about the environment or the background noise it was more about his story which kind of captured me and what I found out very quickly is we had a lot in common.
Myself and Adam are super geeks we like all things Marvel, computer games, retro stuff and while Adam has lived with his facial disfiguration all of his life, I have only been disabled for a few years. We quickly established we came across the same issues, people staring at you, people asking stupid questions but also people recognising Adam from TV. Asking him if he is that person from TV, as if he is going to be someone else, given that fact that he has probably the most recognisable face of disability in the UK.
So, what turned out to be an hour and a half meeting turned up to be hanging out for the whole day. My cousin lives in central London so we ended up going back to her place for dinner and we talked for about 6 to 8 hours and because we get on so well, we are in talks with the BBC about doing a podcast and TV show. Since my first meeting with Adam which is almost two years ago, we have become very good friends. What we also find hilarious is we can take the mick out of each other’s disability we are very immature, and a terrible sense of humor and we find it funny how people perceive us.
What I came to realise is that the podcast was not just about people with disabilities, but for me it was therapy. I was speaking to people about my disability and raising issues of my Cauda Equina Syndrome, while also raising awareness of their disability and this I believe is the reason why I wanted to do the show in the first place, because I had not gone to therapy before, I had not spoken to anyone about having my mobility taken away from me. This is the way of expressing how I was feeling to cope with being disabled for the first time.
Today I do not get embarrassed or shy about meeting celebrities however one of the other interviews I did was with former rugby player Matt Hampson, he is paralysed from the neck down following a scrum collapse whilst in training for an England game.
Being from Leicester I had followed Matt Hampson story for years, he has often been on the front page of the Leicester Mercury. Matt has raised millions of pounds for charity, set up his own rehabilitation center in Melton and it was Matt who I was more nervous about meeting than anyone else – so much so I completely fell apart when I interviewed him.
Matt has a very good sense of humor, I was not trying to be weird I was just overcome with emotion that I was meeting Matt Hampson. You see these things on TV all the time when people meet their heroes and I completely fell apart I turn into a five-year-old and getting my thoughts together was just not possible.
After the interview, I sent an email to apologies and me being stupid to him. I think he forgave me by now but we do not keep in contact because I am just too embarrassed. Although I have visited the Get Busy Living Center a few times as it is a fantastic facility for rehabilitation but also some ideas for my home for adaptations.
Dan White is one of the nicest people you could wish to meet. Dan is a disability campaigner, television presenter and radio presenter, he is also the main carer for his daughter Emily who was born with spina bifida. Dan also has bipolar and has episodes where he gets depressed and sometimes struggles with his mental health. For years Dan has been campaigning to get extra assistance from the government, he only gets about £70 a week being a carer for Emily which is disgraceful.
If Dan stopped doing his job and stop caring for his daughter then the government would have to pay out a fortune. For me this interview highlighted the need for carers like Dan to be paid at least the national minimum wage or if not the living wage as a bare minimum for the support that he provides for his family and I hope that the show will raise awareness of this and for the government to take action.
As the show progressed I managed to get more celebrities for example Dame Tanni Grey-Thompson, Michael Caine (the TV chef), Countess Swinton, Comedian Rosie Jones and again sitting down with them it’s kind of a weird experience because you’re getting to know the person very intimately very quickly talking about their life story which has an impact on the interviewee because you feel really close immediately. There is almost an instant connection because you share something with them or something really personal and it’s difficult to let it go because you’re there to do a job and you think you become friends with them but in fact, you’re not you’re just there for an interview.
The celebrity world of disability is a very small world and I am fortunate to be a part of it. The lengths that people go to, to highlight disability, campaign for disability awareness is not about being inspirational, it is about having the same basic human rights as everyone else. Doing this podcast, I have found that the government is frightened of disability. It is so undesirable and unapproachable by the government that they are harming people in the community rather than actually supporting people in the disabled community.
So, what has ‘While Disabled’ done for me? It has opened my eyes to a world I didn’t know existed. I think that if most people listening to the stories of the celebrities on the show they will see that another world exists but people are choosing to turn away, it is like picking up the remote control when you see poor people or charities asking for donations on TV you turn it to Friends on Comedy Central for three minutes.
While I have a new way of living, during the making of this podcast I have made some fantastic friends, yes we have serious injuries, facial disfiguration, mental health issues we also have a sense of humor and we realise that yes, we need extra equipment and extra assistance but it is also quite funny sometimes to have a disability, it is great for parking and jumping the queues of concerts or a theme parks.
If ‘While Disabled’ has helped a little to raise awareness and opened people’s eyes to a hidden world than it has done its job. I hope that more shows featuring people with disabilities is significantly improved and not just there to meet a government quota.
To listen to While Disabled click link below: