Thursday 8 September 2016

Interviews with inspiring people. #Paralympics2016 - Part 2.

  • 1) Briefly describe yourself & your disability. 

    I'm Sarah 31 originally from Lancashire now living in Coventry. I'm a Geography graduate, trained teacher and I run a charity called Sent with Love. I've got MĂ©nière's disease, Neurofibromatosis type 1. Anxiety and depression, a brachial plexus injury, chronic fatigue amd spine/nerve damage from surgery for my cancer, a soft tissue sarcoma called MPNST. 2) Who encouraged/inspired you to do what you want in life? (or helped) 
    The person who inspired me the most was one of my teachers called Mr Ashcroft, he taught me that you don't have to be an *A star student to be successful and he gave me the confidence to do what I wanted.
    3) What's your biggest bug bare around the perception of disability? 
    That if you use a wheelchair you can't stand. People use wheelchairs for a variety of reasons, I'm able to stand and walk a very short distance but it leaves me in absolute agony so in order to enjoy time out the house I use a wheelchair.
    4) How do you think other people see your disability? 
    I think they don't understand it, I've very limited use of my left arm due to having a time removed from my brachial plexus (the nerves that control the arm and hand) sometimes my arm and hand work other times it doesn't. Which makes using my wheelchair very different. My closest friends are very kind about everything, they look after me well, driving me places as I currently can't drive due to a suspected seizure, and dropping me texts asking how I am, but as for the general public, I don't really care how they see me as long as they are not abusive and I've never experienced any kind of abuse so I'm very lucky.
    5) What would you like to see improved for those with disabilities? 
    Social care needs to be improved, I have care twice a day, once in the morning and once at lunch time but the times are so rigid they don't often work when I have hospital appointments or are having a crash week, where I can't get up I can sleep all day and. Wake up at 3pm to eat lunch I was given at 11.30. I also think pavements need to be improved, there's lots of pavements without drop kerbs or the drop kerbs don't line up on the other side so you are travelling in the middle of the road for a period of time and that's when the pavement is wide enough to use or not blocked by cars or street furniture.
    6) Where do you see yourself in 5 years time? 
    Hopefully in a new job, I'm hoping to go to university next year to study Occupational Therapy, so I hope that I will be working in a job that has given me so much personally since my cancer diagnosis.

    7) How would you inspire the next generation? 

    I hope through my Charity Sent with Love, we make blankets and send them to people diagnosed with cancer. I recently won the Pride of Coventry and Warwickshire Award fir this work, which I'm so proud of.

    1) Briefly describe yourself & your disability. 

     My name is Asa Marshal, I am 27 years old. I was born with a physical disability called ‘Cerebral Palsy’, which means I cannot use my limbs properly. I use a wheelchair and walking frame to get around, but can walk a little unaided too or with the help of someone’s arm, furniture etc. I also suffer from Dystonia, which means I have continuous involuntary movements (twitching / spasms) running throughout my body. Living with a physical disability can be a struggle at times, but I try not to let it hinder my goals and achievements. I am an Audio & Music graduate. I have been modeling since the age of 16. I was extremely fortunate to take part in the Opening Ceremony of the Paralympics in 2012. Won the title of ‘Miss Personality’ in a beauty pageant, and I run my own charity, ‘Achieving Strong Aims (A.S.A)’. A.S.A helps young adults (aged 18-30) with physical disabilities. We organise outings, informal seminars and thrill seeking activities for them. We also hold events in communities to raise awareness about disability in society

    2) Who encouraged/inspired you to do what you want in life? (or helped) 

     My family has always been the biggest support for me, especially my mum. They have always encouraged me to stand on my feet and fulfill all my hopes and desires regardless of my disability. They really have been my backbone through the good times and the hard times. I don’t know what I would do without them. My friends have also been a huge support to me, they encourage me, are always there when I need them, they help me in every way they possibly can, I can let my hair down and be crazy with them haha, etc. Again, I don’t know what I would do without my friends either. Both, my family and friends are amazing; they are the ones who help me get through life.

    3) What's your biggest bug bare around the perception of disability? 

     People who look down or pity you and assume that just because you have a disability, you aren’t able to do anything. They may assume that you can’t work, don’t have many friends, can’t have relationships, don’t go out etc, you don’t live a ‘normal’ life like others, or are startled when you do. I think people who are unaware or maybe don’t understand disability should be more open to asking questions, we don’t bite! Haha. Another bug bare is people who stare or don’t look at you at all when having a conversation. The worst is when they don’t talk to you directly; instead they ask the person who is with you. 

    4) How do you think other people see your disability?

     I would say it depends on the individual. Again, some people look down at you or pity you. Others see you as an inspiration or an incredibly brave person. I think people who actually know you closely or understand you, like friends or family, just see you as they would any other person. 

    5) What would you like to see improved for those with disabilities? 

     More awareness or education for society. I think people still need to be more aware of disability, what it is, how to interact with a person who has a disability. More disabled people in the media. More acceptance. 

    6) Where do you see yourself in 5 years time? 

     Ideally, I would like to settle down, get married and start a family, along with a successful running charity, modeling career and further exciting opportunities that I can be a part of. But as we all know, unfortunately things don’t always go the way we would like them to sometimes, so I just live each day as it comes and hope for the best. 

    7) How would you inspire the next generation? 

     I think things like the Paralympics, the athletes, the Invictus games and other people with disabilities who are in the media (like Ade Adepitan, RJ Mitte, Stephen Hawking, Francesca Martinez etc) are already an inspiration to many. I would like to think that I could be an inspiration too, along with all the other million disabled people that are out there; they are all an inspiration in my eyes

    8 ) Which sports do you look most forward to in the Paralympics? 

     I wouldn’t say I necessarily look forward to one specific sport in the Paralympics; I enjoy watching them all and find them all incredibly inspirational!


    1) I'm Clare 28 yrs old , I became a full time wheelchair user at the age of 13 due to a rare inherited condition called Ehlers danlos syndrome. It's an connective tissue disorder which can effect every part of the body including heart, lungs, GI system. For me EDS affects my joints so I get dislocations, subluxations etc, eyes, lungs, heart, GI system -oesophagus, stomach and bowels are affected. 

    2) Since getting my canine partner assistance dog I've found he's the one that encourages me to do more/want more in life.
    3) My biggest bug bare around the preception of disability to be that we're incapable of being intelligent especially for wheelchair users.
    4) My disability is quite visible although I look normal, I assume people think I just can't use my legs which is far from how bad my condition is.
    5) More equality and more opportunities.better housing. I'm a disabled person with an assistance dog I would like to have more education on assistance dogs for the general public.

    6) Hopefully moved to Aylesbury to be nearer to family (family had to move an hour away because of the bedroom tax) working part time and fingers crossed in a relationship. 
    7) Any opportunity that comes your way take it , have an CAN DO attitude always try your best. 
    8 ) Archery. I love archery I had a few lessons and really enjoyed it unfortunately the club wasn't accessible to me so couldn't take it up as a sport but if I find a club which is accessible id be there all the time. 
    I performed in London 2012 as a wheelchair dancer (gravity part or as I call it the bit with all the apples). I had never performed before or been involved in anything to do with dance so I was a little nervous going to the first rehearsal but I shouldn't have worried it was AMAZING from the very first rehearsal I enjoyed every minute making new friends learning the dance routine which we had fun making and just being involved in something so special definitely an amazing experience one I would of said once in a lifetime but this year on 2nd of September I got the pleasure to be in the Paralympic heritage flame opening ceremony at stoke Mandeville this time I was performing with my canine partner assistance dog Griffin who made the experience even more special. Again we made so many friends and had so much fun making a dance routine adding doggy hi fives and bows for Griffin to do and he loved it. It was live on channel 4 and we even got a personal mention. An experience I will never forget.

    My name is Gemma and I'm 33yrs young. I'm a Liverpool girl who loves everything glamorous and who's life is now completely different than I ever could imagine it. In 2011, I became ill with an illness called Guillain-Barre Syndrome (GBS). At the time I was loving life as cabin crew without a care, then over night I had everything that we all take for granted was taken away from me. My body began to shut down and become paralysed, starting with my hands and feet. Over a few days I lost complete function of my body and was reliant on others for everything. This was followed by months of intensive rehabilitation to retrain my body to do everyday things like swallowing and talking. My body was damaged through the GBS and now 5yrs later I'm still living with the the effects. I'm unable to stand or walk unaided and now rely on a wheelchair and the occasional wobble on crutches to get around. Despite all this, I'm probably in the happiest place I have ever been for many reasons and I have learnt so much about myself.

    I have always had the most amazing family and friends around me, who have always been there supporting me in everything I do. This was tested to the limits throughout my illness and recovery and has shown me further how lucky I am to have the people I do in my life. My parents especially! No parent should ever have to see their child suffer at any age, and be told life changing news about them. My parents not only watched me go through everything, but they also were the strength behind my recovery. Nothing was ever or is still ever too much. I am eternally grateful for my family and friends. My now fiancé, Neil, is literally my rock! He constantly gives me the unconditional love and support to carry on and to find the positives in what have been some extreme negatives. Neil has only ever known me as I am now, disabilities and all, and he loves me as I am...who could ask for anything more!?!
    I discovered an organisation called Models of Diversity a number of years ago, when I really was at a low point. I struggled accepting my new body, it's limitations and it's not so appealing appearance.
      © Copyright - Angel Sinclair/ Models of Diversity.
    I met the CEO Angel Sinclair, who literally is the most amazing woman, who truly helped me in a journey of acceptance. I was still myself, just in a slightly different form. I learnt to embrace my body and all its lumps and bumps, and I honestly have more confidence now than I ever did before. 
      © Copyright - Angel Sinclair/ Models of Diversity.
    Angel set up Models of Diversity to bring about a much needed change within the fashion industry. Ever since it was set up MOD have gone from strength to strength, promoting equality within a very segregated industry. Modelling now as a disabled model helped me to come to terms with everything that had happened to me and to put it to good use in a really positive way. I love showing others that if I can overcome adversity and do something positive then others can too. I love breaking down boundaries and proving people wrong, which is why I have been so involved with MOD. Change will happen!
    I have had sooooooo many ridiculous comments over the years that I would never in a million years even dream of saying to anyone. Comments like, "you don't look disabled", "your too pretty to be in a wheelchair", or people basically asking if I can have sex?!?! They are just the tip of the iceberg as people wouldn't believe half the stuff people with disabilities have to deal with on a daily basis! Don't get me wrong, it's not everyone, I'd say it's probably around 60% of people have a very warped view and opinion of people with disabilities. Talking about us as if we are all the same, or presume what we can and can't do without giving us a chance. I think people sometimes view me and others as someone that you should feel sorry for or feel bad for. When we want the total opposite! I personally don't want to be pityed, I'd rather shock the hell out of someone, which I often do. I really could go on forever about this! I basically hate people's misconceptions that are based on things wrongly portrayed in media etc. We are all still human beings and individuals with our own minds, opinions and feelings, and should not be generalised. With the work that MOD do, we try to change people's opinions of disability and show it in a whole new light to make people stop and think, 'there's a beautiful girl modelling, rather than, 'there's a girl in a wheelchair'. It's all about seeing individuals as just that....individuals!
    I'm currently planning my wedding to my amazing handsome hunk of a fiancĂ© Neil. It's so exciting thinking that I am marrying the man of my dreams. It took me a while to get my head around being a disabled bride, but I have now totally embraced it now. It's the beginning of a new chapter in our lives and hopefully the next fives years will see us take on new challenges as husband and wife and hopefully as a mother and a father. This will be the best and most worthwhile challenge of all, seeing how I am as a mum who just happens to have a few disabilities.
    I want my experiences and what I've been through to be a benefit in any way possible. I hate the word inspiration when talking about myself, but I would love to show others that if I can overcome my life totally changing then they can too. What ever their adversity may be!! Life is made up of so many beautifully diverse individuals that should be embraced in every way. Fashion and media is something that is so influential, yet it's not fully representatives. Diversity is part of life and it should be portrayed in the same way.
    The Paralympics are something that has a massive impact on people ever since London four years ago. The athletes are seen as the athletes they are, and are celebrated as heroes in the same way the Olympic athletes are. I love every part of the Paralympics and it's events, but more than that I love how it puts disability in the forefront of the media in such a positive, strong and empowering way. Youngsters with disabilities now have people they can aspire to be like and whom they can empathise with. The only issue is, is in keeping the momentum going after the Paralympics finish and the hype dies down. Disability is part of life every single day for millions of people yet it's only really celebrated and empowered every four years! This is what we need to change!
    © Copyright - Angel Sinclair/ Models of Diversity.

    Laura Jones

    I’m Laura. I’ve been a professional dancer with Stopgap Dance Company since 2001 and I am now the interim Artistic Director of the company.  I had a spinal bleed when I was 16 which left me paralysed from the chest down, so I now use a wheelchair, including for dancing.

    Who encouraged/inspired you to do what you want in life? (or helped)
    When I was newly injured, my tutors at college played a great role in helping me to return to dancing and continue with my A Levels. I also had huge support from family and friends.  Now, I am encouraged to continue with my dancing partly because I love it and can’t imagine doing anything else, but also because it gives me the opportunity to inspire others, to be a role model and make a positive difference.

    What's your biggest bug bare around the perception of disability? 
    There seems to be 2 extremes to people’s perceptions of disabled people.  We are either “super humans” and “inspiration porn”, or we are “benefit scroungers” and a drain on society. When most of the time we are just normal people trying to go about our everyday lives, but facing more challenges and barriers than most people have to deal with.  I also get frustrated with the way my life seems to be public property;  I’m always getting random strangers asking me personal questions, before they’ve even asked my name!
    I think people who know me see me as very positive, successful, who doesn’t let my disability stop me from doing things, but in truth, I still have bad days and struggles.  There are days when my disability stops me from going out or doing what I want to do.  

    What would you like to see improved for those with disabilities? 
    There is still so much that needs to be done. Unfortunately we are a long way off from being a fully accessible and inclusive society. It’s not just about pphysical access to things like buildings and transport (which is still far behind where we should be)but also access to opportunities, whether it’s education, work, activates or social, there are many barriers that disabled people face every day.    
    The Paralympics are going a long way to change people’s perceptions of disability and what is achievable with the right support, but it’s sad that after it is all over, things seem to go back to the way they were.

    How would you inspire the next generation?
    I’m really lucky that I can inspire the next generation through my work.  Both with performing and teaching dance to people with and without disabilitiesties, it opens people perceptions of what is possible, and can inspire them to push their own boundaries of what they think they can achieve.
    Recently, I was honoured to be asked to choreograph the Heritage Flame Ceremony, to celebrate Stoke Mandeville as the birth place of the Paralympics, and to light the Paralympic Flame to send to Rio.  There was a cast of about 100, which included all sorts of people from different ages, abilities, back grounds and dance experience (or lack of!).    Everyone was super enthusiastic and it was an amazing atmosphereI was pleased I was able to show them, and the audience, what is achievable through inclusive dance.

    Which sports do you look most forward to in the Paralympics?
    I’m loving watching everything from the Paralympics, especially the swimming and the wheelchair tennis. I have to admit, I’ve found it much more interesting to watch than the Olympics, there’s so much drama, and hearing some of the background stories of the para-athletes gives a feeling of connection to the action, when you realise some of the challenges they have been through to get to where they are. Plus the whole of Paralympics GB are doing amazingly well, getting so many medals, it’s so exciting to watch!

    About Stopgap Dance Company - “Difference is our means and our method”

    Stopgap Dance Company creates exhilarating dance productions for national and international touring. We employ disabled and non-disabled artists who find innovative ways to collaborate.
    Stopgap value a pioneering spirit and are committed to making discoveries about integrating disabled and non-disabled people through dance.


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