Introduce us to Martyn Sibley. Who are you? Where are you from? What makes you an Indoor Boy?
I would say I am a regular guy who rolls with laughter and looks for the positive in everything. My name is Martyn, I am now 27, I grew up in a small town in Cambridgeshire, England and have been disabled since birth. My disability is genetic and it means that the messages from my brain do not reach my muscles. So, whilst my muscles are fine and I feel everything, I have limited movement. Therefore, I rely on a wheelchair, care staff, and an adapted vehicle to drive with my hands.
I say “regular guy” because there is nothing in my daily routine which is amazing. I dislike the view that I am “doing great despite my disability.” However, I could write an essay on how living a normal life is more difficult when you are disabled. Furthermore, and the reason I would describe my worth as an Indoor Boy – I have more recently achieved some things a little beyond the “norm.” I have a Masters degree in Economics and Marketing, have travelled to Australia with 2 personal assistants, and now run my own disability consultancy company (outside of my day job).
Up to 4 years ago, my life was about furthering my own progression. Getting a good education, travelling the world, living independently, progressing in my career. I still am looking to progress myself, but it is not my sole purpose. I have found a passion of mine is passing on the information I have used to meander my way through life in my wheelchair, and using my experience to inspire others. I hope in the long run this creates positive social change. This change would be found from higher aspirations of disabled people and from the general publics’ perceptions of disability. From this passion my website was born.
Can you talk a bit about your website (http://martynsibley.com/)? Do you consider yourself an activist?
The website idea began when I delivered a talk to some disabled teenagers. To see the look on their faces that they could go to uni [university], drive a car, have sexual relationships, etc… was very powerful. As I couldn’t deliver these talks regularly, I started a blog. Early on my writing style was descriptive and my content diarised. Over time I have covered broader news articles, written political/economic pieces, and found a more holistic journalist style. Feedback is positive and my travel posts seem to be the most popular.
I used to hate the idea of being an activist. The stereotypes I had were of angry, shout-y people only seeing the negatives. Since reaching adulthood and being exposed to the “real world,” my views have converged. I partly understand why there are times one has to stand up for their beliefs when an injustice has occurred. Therefore, trying to be happy and positive doesn’t always win out. However, I also believe that I can be an “activist” by standing up for my beliefs and the rights of other disabled people in my own style. I really am a “happy-go-lucky” chap and would never lose this sunny disposition. I guess I see myself as a new-age activist -– using social media and positivity to bring about social change.
What have been some of your personal triumphs?
I have had many personal triumphs. Whenever a person goes through change -– nursery to school, school to college, college to uni, uni to work, there are many challenges. When you have a disability like mine, you can multiply the issues by 100 in making that step and settling into the change. Therefore, during all of the above, I would say I had a personal triumph.
Clearly, gaining my masters degree was a great moment for me — as was gaining my first job. However, I gained the most satisfaction in my first travels without my parents caring for me. When I went to Australia I had to arrange the government money to pay for my care, recruit 2 Personal Assistants, book the flight including my wheelchair details, ensure every hotel was accessible, hire equipment when I was out there, and arrange appropriate transport between cities. This 3 week trip was one of the best moments in my life (see my flickr album for pics).
How do you feel about the words “handicapped” or “disabled?”
My knee-jerk reaction to this is I ‘hate’ handicapped and am ‘not sure’ about disabled. From the disability training in the UK regarding language, “handicapped” is a no! It apparently derives from disabled people begging and having their “cap in hand.” I understand in the US it is the norm. For me, language is only an issue if the intent behind the word is negative — then I have a problem. Every country uses different wording.
“Disabled” is the preferred word in the UK. This is under something called the “social model.” Here my “impairment” is called Spinal Muscular Atrophy but I am “disabled” by barriers in society. Therefore, it is not implying I am “not abled,” but that the way society has been constructed has resulted in my not always being able to participate in daily activities. To explain, when a building has steps I am disabled, but when a ramp or lift/elevator is provided I am not disabled.
I still have issues with the word in an everyday sense because non-disabled people do not know of the social model. Therefore “disabled” can create negative connotations. Overall, I dislike getting hung up on wordings, but do appreciate the importance of them with respect towards individual’s feelings and oppressing minority groups.
Can you talk a little about what’s happening to the Independent Living Fund in the UK?
I have mentioned my full time care. My Local Authority assess the level of my care needs and instead of paying a service provider, they give me the money to purchase services for my additional needs. The Local Authority fund the basics such as eating, sleeping, washing, and so forth. However, I need assistance to get out of the house, to use the loo during the day, and in other everyday tasks. The Independent Living Fund [ILF] tops up the budget, so I can afford to pay a Personal Assistant to access leisure, see friends and generally have a normal social life.
Disability funding is complicated because there are varying streams paying for varying needs. There is the basic need of care from the Local Authority, top up from the ILF and another from the department of work and pensions recognising the extra costs of mobility, for example. Essentially, they are all from the government and it’s great they exist to enable someone like myself to live an inclusive life, happier/healthier, and contributing back to the economy, too. There are many assessments, monitoring processes, and general bureaucracy. You need a degree in this to get by sometimes.
Recently, amongst the UK’s budget deficit, the government is looking to cut parts of public expenditure. One area is the ILF. The idea is that it is the Local Authority’s responsibility to pay this anyway. With 20% (minimum) cuts in Local Authority this is doubtful. Therefore, if my care budget is slashed in half by 2015, as threatened, my PAs could not work the hours they do for half the price, nor would anyone. So I would be left with less care, unable to do fun things, and potentially left in quite a vulnerable situation.
Your sunny disposition is best conveyed through your video blogs. Which video would you recommend our readers view [besides my personal favorite, a song from Jack Black plugging your website]?
“When I met Jack Black at LAX, he kindly did a plug for my website.”
“When I flew an aeroplane, I didn’t land for days. ”
“When the German lad, Reinhardt, visited London-town anything and everything happened.”
“In November 2010, 3 British guys and an Austrian girl headed to the West coast of the USA. This is the fun that ensued.”
You’re quite the world traveler. What are some of the challenges you face as a traveler many of us would not be aware of?
I touched on some of this with the Australia comment. The challenge is booking a normal trip based on my likes, but then seeking solutions. Brazil is on-hold as it requires more planning, while Cuba doesn’t have one accessible vehicle. So my needs do matter, but should never be the base point of choosing a destination.
What have been some of your favorite adventures?
Sorry to be minimalist, but I would refer to the Oz [Australia] trip again.
Another would be attending my first-ever music festival. It was “T in the Park 07.” Held in Scotland, my now ex-girlfriend, my step brother, and his girlfriend at the time, headed out at 4AM Friday morning. We drove 8 hours (myself, and the latter two sharing the work). We arranged to drop off my step brother and his girlfriend, as my girlfriend and I only had Saturday and Sunday tickets. Because I require a hoist to lift out of my wheelchair and tents are tight, I booked a “nearby” hotel in Glasgow. After battling through the traffic and dropping off those two, we arrived at the hotel around 17:00, 13 hours after we left Cambridge. 30 minutes after arriving, they called saying they felt unwell without the shuttle bus to get back. So, I had to drive from the “nearby” hotel 1 ½ hours back to the site.
Having been awake and driving for many hours, we passed out, dragged ourselves up Saturday morning and headed back to the festival. With a lot of rain my chair was sticking, slipping and sliding everywhere. At one point my girlfriend pushed me out of a rut and I wheelspun mud all over her! We laughed about it, though, it was a festival after all.
We saw so many cool bands, “bumped” into friends from Cambridge and had an amazing time. I am now looking into another festival nearer London this summer and separately into camping in an actual tent with some mates in the warmer climates to come.
Where are you off to next? In travel and in life?
I haven’t mentioned my work at the disability charity Scope yet. I work in their fundraising department and love the role I have been in for nearly a year. I have projects and achievements to complete here for now. As they say my work here is not yet done. Alongside this I plan to grow the blog, consultancy, and roll out online seminars to disabled people. This will enable me to reach more people with little effort and maximum impact. The seminar contents will cover running your care team, travelling the world, and many other topics I have collated helpful information on.
In the longer run, I hope this will create enough income to sustain my livelihood. Once I reach this point I plan to use the flexibility of self-employment and Internet-based service by travelling more. I aspire to take on “pop up” projects in the UK and abroad where I collaborate with other organisations and progress social justice generally. This could be capacity-building charities on social media at home, followed by a trip to South America, Africa or Asia, and working on political economy issues constraining disabled people.
Really, the world is my oyster, I have many things in work and play that I enjoy, and so I aim to continue this. My family and friends are so important to me, so I will ensure we stay close and bring them along for the ride when appropriate, too. Who knows what I will be doing and indeed planning in 5 years? I just know I will enjoy the ride, keep my health, keep smiling, and aim for “sunnier days” for all.