Here’s my first report for 5 News, exploring the idea of a Paralympic Legacy and what it means to disabled people.
It was an amazing day working with great people, and fingers crossed they ask me back. Watch this space.
This weekend Diane and me are off to enjoy Derby Feste, the city’s annual arts festival. It’s always a thoroughly enjoyable weekend for us, as Derby is one of those places that gets access for disabled people and so allows the disabled visitor to switch off while they are there. When you combine this freedom with a fun filled itinerary of arts for all the family, from street theatre through to the music and firework extravaganza that ends the festival, which this year is courtesy of Les Commandos Percu and Deabru Beltzak, it’s one of those events that is a must see. Luckily I will be accompanied by my mate and local actor Emily Howlett, founding member of Deaf Arts company PAD Productions, who will be giving me the skinny on the secret side of Derby. I am planning a review for the Huff, both of the festival and of any key shows that grab my eye. So watch this space. And if you are knocking around Derby this weekend and see Di and me come and say Hi! Especially if you have something in mind that you think we just have to see!
This week Eddie Redmayne won yet another award for his portrayal of Stephen Hawking in the Theory of Everything. My review has just been published in this issue of PosAbility magazine, but as so many of you have been asking to read it I thought I would also put a scanned version up online. As well as my thoughts on the film I explore the wider issue of non-disabled actors playing disabled, and chat to disabled acting talent to find out their views.
I’d also love to know your thoughts on the issue, so please send me your comments.
Click on the thumbnails to enlarge the image.
If you are having trouble reading these images here is a PDF version. Theory-of-everything-review-posability
You can purchase a hard copy from PosAbility.
I have been a busy boy recently.
As August drew to a close, I found myself reflecting on what it means to be getting old. I had just celebrated my 49th birthday, and as my parents were told I wouldn’t make it past the age of 5 the fact that I am nearly 50 really hit home. So I wrote it all down in a piece called Aren’t You Lucky? or Another Birthday, Another Miracle.
Something that I really enjoyed was reviewing some of the shows put on as part of the Unlimited Festival at London’s Southbank at the start of September. In case you missed them here they are;
The Dinner Party Revisited – Katherine Araniello’s fun filled anarchic video performance show.
Guide Gods – Claire Cunningham’s exploration of religion and disability using dance, music and spoken word.
Let Me Stay – Julie McNamara’s one woman show about her Mother and the impact that Dementia has had on her the wider family.
I’ve also written a round up review for PosAbility magazine, that will be in the next issue.
Just as I thought it was time to focus on a series I am currently writing on the topic of bionics (perfect for someone who dreamed of being the Six Million Dollar Man as a child) I found that I had to put finger to key board in reply to an article in The Guardian called “Don’ts aren’t working: Here’s five things you can say to someone with a disability” as I so disagreed with it. As I run training sessions which revolve around techniques for both discussing disability and how to talk to disabled people I thought the piece was troublesome to say the least and so I gave my views on the issue in Cute… But Wrong!
On top of that I carried out some training for Network Rail up in York, and shall be back in October.
Phew, it’s been a busy few weeks. But there can be no rest for the freelancer, and so I shall leave you and get back to work!
I am writing this during a break in packing for the first holiday my wife and I have booked in over three years, as I need to take my mind of the increasing panic I am feeling. Writing it down makes it more real and not seem so crazy. You see one of the driving reasons why it has been so long since we last traveled to foreign climes is my dislike of traveling abroad. But this is not a phobia, not but is instead based in the litany of cock ups, disasters, mistakes and down right discrimination I have faced during the 25 years I have been trying to see the world. In fact one of the things that always amazes me when I read any foreign travel story written by a disabled traveler is that they hardly ever experience any major problems. Every time I have gone abroad something has happen worthy of an entire book, or a comic farce at the least.
It began with my first trip away to Ibiza in 1988, at the tender age of 23, with my great mate Trevor Beasley. I should have known the omens were bad when I was dropped by the ground staff who carried me onto the plane. Not only dropped, but dropped onto my spine – the root of my impairment. So to say it hurt was a considerable understatement! That was soon forgotten as we did the decent thing for two young guys on a lads holiday and got very drunk on the flight. We arrived at the hotel only to find that the room that we had been promised would be OK for my wheelchair had a minor issue… I couldn’t get through the bathroom door. The solution? We removed the door. So this meant that Trev and me got better acquainted the we would have preferred, but the holiday could proceed. After three days of sun, sea and failing to find sex, on the way back to the hotel after another boozy night, there was a terrible crunching sound and my chair broke in half. IN HALF! We fought our way back to and I then spent four days stuck in our room, having food brought up to me by the mate of which ever girl Trev was trying to chat up. Finally Trev found a garage run by a guy from Scotland, which allowed Trev to describe what was wrong with the chair in English, and he bravely carried the broken scrap metal to a nearby town in the boiling mid day sun to be repaired. (yes he never tires of telling me how tough it was, even to this day) It returned welded solid, and so was possibly the first rigid frame chair ever. All of this had taken the shine off the break, so we decided to stick to attending a nearby punk bar for the rest of the holiday in case of any more “incidents”. When it came time to leave, I sat on the place filled with feeling of happiness. I was going home and so nothing else could happen. Until I saw the baggage handlers jumping on my welded open chair in a futile attempt to close it. On arrival home I found both wheels were buckled and had to spend ages stuck on house arrest waiting for a replacement chair to come.
What is most amazing is that this is not a one off. Everything that happened on that holiday has been repeated in some form or other on almost every other time I traveled abroad. Not only for a holiday, but for work too. I once went to New York to film a travel program for the BBC. Not only was I a wheelchair user, but so was the director. When we landed at JFK all hell broke loose. The ground staff refused to help either of us off the plane. While I eventually decided to crawl the length of the plane and down the steps to the ground, my director could not as she used a powerchair and just could not crawl. So now we have a plane that needs to be turned around with a cripple stuck on it. After an age, getting near to an hour, the panic became fever pitch and the poor director was manhandled off the plane by cabin staff, mixed film crew and anyone else nearby. Even after we got off, this major world city was not all wheelchair heaven. The freakiest thing was the wheelchair accessible cab we hired to drive us around for the period we were filming there. The driver smoked super strength weed all day and night, freaked out at regular occasions and drove off without us twice. And of course my chair broke and I pulled a muscle when I got thrown out of my chair by a massive pothole in a road I was crossing (note New York has great pavements but the roads are appalling!). I won’t bore you with my long list of other reasons why it was a disaster because I disliked the city so much I fear it might have coloured my view.
But my most recent trip away really put my off flying, almost for good. After a fairly successful trip to Cyprus, with only a minor wheelchair repair incident, my wife and I arrived at the airport with a feeling that maybe our travel jinx had been broken. As well as ourselves there was a other nice couple waiting to be loaded onto the flight, with the wife being the wheelchair user in this love match. We queued to get on the plane, but instead of being let on first as usual, we were made to wait until the very end. I got onto the plane only to see that the seats at the very front, usually reserved for disabled people, were filled with people who had paid for early boarding. When I asked if anyone would move, they all firmly said no. Luckily someone on row three said they would, and I fought my way to this seat. I should say that I now no longer allow anyone to carry or assist me when getting on or off planes, after way too many disasters, so I manhandled myself to this seat. The other wheelchair user was not so lucky. She needed a much greater level of assistance, and it was obvious to anyone who cared to look that she really needed to be sat at the front of the plane. But still none of the people who had paid six whole pounds for early boarding would move, especially the only person in the six seats who was traveling alone. He was quite insistent that he had paid for the seat so he was staying in the seat. Instead this poor woman had to be carried down the aisle of the plane way back to seats sixteen or seventeen rows back. By the time she arrived at her seat, her blouse was over her head, her skirt was round her ankles and she was screaming in discomfort. On arrival home we were met by the UK ground crew who were stunned to find the seats we had been put it, if for no other reason that it made their jobs harder. We swopped numbers with the couple as we wanted them to claim against the airline but heard no more.
As I said earlier if I tried to list everything that has ever happen when traveling abroad this would be one of the longest articles in history, there have been so many. A humdinger was when we arrived at a hotel and got our keys to our room on the forth floor, but when we asked “where’s the lift” were met with the answer “What lift?”, or the time we tried a package holiday from a supposedly accessible holiday company only to arrive at the hotel to be told they don’t have any accessible rooms. We ended up being moved to another hotel to a room that meant I couldn’t wash for week as there was no accessible bath or shower. The list is endless.
But don’t let this put you off traveling if you are disabled. What you need to do is plan. Plan for every eventuality. This time away I am taking a full puncture repair kit, plus we know the Spanish for bike pump, a mini tool kit, every type of pills and potion I might ever need and a full knowledge of both local and international equality and airline law. To me foreign travel is not super fun, but more a test of endurance. But us disabled people do like to prove we can do something, and the harder it appears to be the more some of us like to it. All I will say is next time you read one of those “Here’s a list of amazing fun things I did when I visited…” articles they may have left out some the less fun events out of the story as not to terrify you. I mean who wants to read a travel article that just goes “ARGH, it was awful!”?
Anyway, back to the packing. Do they allow welding gear on flights nowadays?
After sporting a goatee for many years, of varying lengths, shapes and colours (thanks to beard dye), this morning I took the step of saying goodbye to the beard. Now this may not be the biggest news you’ve heard this week, but it’s going to make getting ready in the morning easier for me. No more fighting to shape my bit of stubble so it matches on both sides (symmetry is vitally important). And of course I can stop worrying about the fact that my beard is going nicely grey.
I have just returned from spending a week representing disabled performers on behalf of Equity’s Member’s with Disabilities committee at two conferences. I am the co-chair of the committee and so I gave speeches at the Equity ARC and the TUC Disabled Workers Conference on the issues facing disabled performers. It was a real honour to be there and to carry on my work on behalf of the people who elected me.
This weekend Diane and myself are off to Cardiff. I am writing a travel article on visiting the city, which is somewhere we have wanted to go for ages. Then, to kill to two birds with one stone, we are visiting a wheelchair company called Roma to do an article on a new wheelchair they are about to launch. I saw the Vida Active at this years Naidex and thought it looked amazing. It has some really new ideas in it’s construction and you get measured in the totally new way. I won’t say more until I’ve tried out the process, but the guys at Roma promise me the same kind of experience that those lucky enough to be buying a sports car have. So I am looking forward to some first class treatment. I do like that.
The biggest news here at Scarlet Towers is the fact that this evening Di and me are having our first Spanish lesson. For years we have been visiting Barcelona, and while Diane has learned enough of the local lingo to get by, I have always been struck dumb and kept my fingers crossed that whoever I was (not) speaking to spoke English. Well no more! So we have decided that before we go back later this year I WILL be able to speak a bit of Spanish. I shall keep you all posted. Hola.
I have just uploaded a new video interview with disabled model Kelly Knox. There will also be a written piece to accompany it on the Disability Now Online website soon.
Kelly won the BBC UK’s Missing Top Model competition and has gone on to to become one of the rising stars of the fashion world. I met with her as Debenhams launched their new campaign that features Kelly and another disabled model, Stefanie Reid.
Yet again the press is filled with the story of a campaigner who are going to court to end the terrible suffering of their life as a disabled person. This it is Paul Lamb who is claiming that his life is should be ended at the hands of the medical profession, as he feels he no longer wants to go on but is too disabled to end his life himself.
I am so saddened that another person feels that they have the right to even consider taking this case to court, whatever their disability or condition. I keep hoping that our society will start to see that if we do go down this road, we are starting out on a very slippery slope. Once the law has been changed to allow doctors and medical professions to assist a person to die, where will it end? I know from own experience that some doctors see someone like myself as having a “poor quality of life”, no matter how much I have tried to make them see how wonderful and fulfilling your life can be when you are disabled. But we never see that anywhere in our media, not even when the Paralympians were going for gold. It’s always how amazing we are in spite of our disabilities, not thanks to them. And you never see anyone who feels like me, that becoming disabled was the making of them. The constant barrage of negativity creates a stereotype of disability that feeds into the psyche of everyone, especially those people who suddenly find themselves with a new level of ability. Something that is really important about Mr Lamb’s case is that he is not terminally ill. No he has a static disability, and therefore is not being “saved” from a ever growing level of illness or incapacity but rather from his feeling that things just cannot get better for him and people like him.
I know, as while I have been disabled from birth, when I became a wheelchair user at the age of 15 I really thought my life was over. I just couldn’t see how I would live, work or find love. I imagined the kind of life which Mr. Lamb describes when he talks about his own. Yet this is not what happened. Instead, with the support of family, friends and many others, as well as taking advantage of all of services that the state provides, I began to build a new future for myself. Within a few years I had started out on the road to becoming the man I am today, with the amazing life I live. I now look back on my newly acquired level of disability as a truly positive thing, the day my life started for real. I truly believe that everyone could learn to feel this way, if they were given all the assistance, guidance and support that is required to help people come through what is a hugely difficult process.
This is what Mr Lamb really needs. Not a change in the law that would open a can of worms for all of us, whether we have a disease, disability or are elderly… or eventually squinty, ugly or just undesirable. No he needs help! From watching his interview on the BBC earlier this evening, it is obvious to me that he is depressed. Not only is this a normal effect of learning to live with a disability, and I myself went through a serious depression early on in my life on wheels, but it is also caused by chronic pain, another issue that Mr Lamb complains of suffering. Yet again this is something I fully understand as I also have long term chronic pain as part of my disability. So I really do understand why he feels this way, but I just can’t support his quest for assisted suicide. I would instead want to see a campaign that ensured that people like Mr Lamb were supported to have the kind of life he wishes he could have, which is possible no matter what society might believe.
We must stop always focusing on the negative stories of the very few people who are finding it difficult to cope and instead expose the myriad of positive stories our there of happy, contented disabled people. It will be of benefit for all of us, disabled or not, and will go a long way to changing the lives of so many people who are having such problems with building a new life after coming to a disability. The thing that saddens (and worries) me the most is that this campaign coincides with the big government push to cut costs and services. To me this is not by accident. Why spend all that money on creating a society that ensures that disabled people can live fulfilling, happy, independent lives when you can assist them out of this world and save all that lovely cash for the fit healthy non-disabled? Combine this with the terrible way disabled people have been portrayed as drains on society or fraudsters and it is a perfect storm for this story.
So please, everyone who reads this; stop and think. Next time you see someone begging to be “put out of their misery”, no matter how much you might buy into the stereotype that this must be the only human thing to do, please understand that you are entirely wrong. The only true act of humanity would be to stand beside them, support them and help them through on their journey to a new understanding of what is possible for someone with a disability. If we all fight to create a world were that is the reaction to seeing people in Mr Lamb’s position then not only will they benefit, and thus become less and less common, but so will we all. Because at the end of the day the fear of how people would cope if it happened to them fuels the public support for this campaign, and of course all non-disabled people are just disabled people the day before the accident or illness hits them. So if we could remove that fear and instead start living in the knowledge that we would all be helped to create a new, and possibly better, life, then the word “disability” would no longer have all the negative connotations that are currently associated with it.
Being disabled should never be considered a reason for a person to be put down. I just hope that one day being disabled will be something that people feel proud about. I know I am… very.
Both Diane and myself are big Jonathon Creek fans and so we were most happy to see that he was about to make a come back tonight. We both sat back ready to spend an evening looking out for clues with the BBC’s floppy haired magical detective. But it soon became clear that alongside the mystery that we were meant to unravel there was another one that might have been missed by most viewers, but one with a more obvious answer.
You see as soon as Rik Mayall wheeled into view, my heart dropped and the game was afoot. “But what is the mystery you speak of Mik?” I hear you ask. Well it why has the BBC’s casting department seen nothing wrong with getting a non-disabled actor to “crip up” and play disabled, yet again. I began to watch closely, trying to seek out those hard to spot clues that might give me the answer. As the show rolled along I started to wonder if the reason was that at any minute Rik was going to jump up and walk. Oh yes, that must be it! HE was the one who was to blame for the shenanigans that Jonathon was trying to make sense of. That must be why the BBC and the JC production team had made such a faux pas. It was going to be the hidden twist and the wheelchair was all a ruse to throw the viewers off the fact that Rik was playing the villain. The minutes ticked by and I became absolutely sure. It just must be the answer… but no, I was wrong. As the credits began to be squashed to one side by information of what was coming next across the Beeb, I sadly knew that I had just sat through another example of just how out of touch the media still is when it comes to disability.
If we ignore that ridiculous idea that there exists a I-Pad clamp that can be used as a weapon by a man who is meant to be paralysed in such a way that he can only move one finger (I won’t say too much in case you missed it and want to enjoy poor writing at it’s best), at no point during Rik Mayall’s performance did anything happen that made it essential that a non-disabled actor was cast to play the role, either through the portrayal or script. In fact it was only that he was a returning character that apparently had been shot and paralysed while JC was off our screens that could be said to be why it had to be Rik.
But the big mystery that this show needs us to solve is why not introduce a new character who was really disabled, both in the drama and in real life? I know of so many truly talented disabled actors who could have nailed this role, including little old me. Not only would have brought a reality to the role, but it would have shown that the BBC is really committed to the idea of Integrated Casting, which all the industry says it is signed up to.
Integrated casting is where disabled actors may be cast to play characters that are not written as disabled and so their disability will not be mentioned in the piece. Now in a way casting a non-disabled actor to play disabled could be described as integrated casting, but in truth it is not. This form of casting is designed to try to mirror the real world, and to get more disabled talent onto our screens. But it was also meant to be the next step that the media took after ensuring that only disabled actors played disabled roles.
In fact casting mistakes like tonight’s just demonstrates that when it comes to disability the BBC is still in the place it was back in the 60’s and 70’s with the portrayal of Black and other ethnic minorities. I shall just say “The Black and White Minstrel Show“. It is just as offensive to most disabled people to see yet another job that should gone to one of us going to someone not disabled, no matter if they are a “name” of not. How will there ever be a big name disabled actor if we never get the roles? How can we ever get to prove ourselves as actors if we never get the roles? How can we even think of going into the industry if after so long campaigning to make the people who cast TV drama to cast disabled people to play disabled people we still never get the roles?
There is no excuse for tonight’s casting. Whatever those involved say it was just plain wrong. It belittled the show, it belittled the viewers and sadly it made me think considerably less of Rik Mayall. As someone who I have worked with in the past, on the show Wham Bam Strawberry Jam; also for the BBC, I would have hoped that he might see that taking the part was wrong. Even if he wasn’t fully versed in disability politics surely it must feel wrong, or at least weird, to play disabled?
In my heart I would hope that all professional actors would see it was wrong to play disabled but no. It’s still seen as fine and might even win them an award or two. So this is a plea to all my fellow members of Equity, the actors union. Please stop taking these roles. If you stop, then the casting directors will have to cast the talented professional disabled actors out there and you will have played a part in making a real change in our society. You will have helped to create a new type of image of disabled people. One that shows we can work, and work in a professional manner, as well as ensuring that when we do play a role we can work with the writers and directors to create a character that is realistic and true to the experience of all the disabled people viewing.
Come on BBC, and every other production company out there, no more. Make tonight’s Jonathon Creek go down in history as it’s the last time you do this. From now on, if the role written is for a disabled character then only cast a disabled actor.
Next we went to new arts centre, The Quad to meet up with Derby’s very active disability group and the council’s Equality and Diversity Manager Ann Webster to discuss the cities entry in to the European Award for Accessible Cities. Developments like The Quad are examples of great inclusive design, with all the facilities on offer being open to all, and as we chatted over sandwiches and coffee it became obvious how vocal local disabled people were in the evolution of their city. Just shows what can be done if you get involved. From this fantastic public facility we visited the local Shopmobility Scheme, which was staffed by a great bunch and really well equipped. Then off to see the new fully accessible bus station, which serves a fleet of accessible buses. I think you can see there is theme developing here.
Although this all sounds wonderful, the funny thing was that both Andy and Stella felt that there was still a lot to do. The picture above is of a proposed new access down to the river Derwent, that runs through the city centre. The plans for the new Council House, which is currently being developed, really demonstrates the commitment to inclusion, as do the proposals for the train station. A key element to Derby is the amount of historic and heritage buildings there are. Normally the preservation of historic buildings can be a bar to access and I know I have worked a couple of projects where all of my work has been stopped by the heritage lobby. But in Derby the council is so pro-access that they provide a fund available to local businesses to pay for any access works on historic buildings to ensure access is created that is in keeping with the preservation of the feel of several areas of the city.
This means that for anyone who is disabled and especially those of us with mobility issues, the entire shopping district is a dream. From the Westfield and High Street, through to the boutique shops in the side streets and even the local markets everywhere you go is just easy. In fact it is so good that when you do stop a shop with a step or two it actually shocks you. On top of the access, every one I have ever met in derby was really friendly and helpful. Before we parted I made sure that Andy and Stella understood that if Derby didn’t win that award there was no justice.
Back at the hotel we prepared for another night out with Rei and a gang of local creative types, including local disabled film maker Jen White. This time were we taken to a student pub The Friary and we weren’t let down. Fully accessible, and very reasonably priced (hic), we had a great time, even if I was easily the oldest person in there. As we got ready to leave the next morning I felt a little sad. After two days of being able to do what I wanted, when I wanted as easily as imaginable, I was going back to the real world.
Now all this might sound like I am in the pay of the tourist board, but honestly I’m not. It’s just that I discovered Derby by chance, and was totally blown away at how easy it was there for me. Every time I visit, I can forget my disability completely. Maybe it seems so good because I live in Camden in London, a place that is world famous for it’s appalling access. All I know is that Derby has won a place in my heart. The council is totally committed to inclusion, as I keep saying, and that shows everywhere you turn. I now hold Derby up as an example of what can be done if you put your mind to it when I am talking to my access clients.
If you are disabled and haven’t been… get yourself there ASAP! Check out the Visit Derby website for information of what going on and places to stay. I know I’m planning to go back very soon.