Hi everyone, my name is Aminder; I’m 20 from Hillingdon in Greater London. I have an unspecified congenital neuromuscular condition. One of the things my condition has taught me, is the insight of the effects each mobility aid places upon a person. Having used many aids such as rollators, a walking frame, wheelchairs and crutches throughout my life, the different responses from society, the independence and difficulties in accessibility, varied in type but still imposed the same level of difficulty.
Being a newbie Trailblazer, just thought I’d introduce myself and talk about a couple experiences I’ve had and how they led me to find out about and get involved in the Muscular Dystrophy Campaign.
Having first heard about Trailblazers through attending the National Conference at Bradford, and first coming across the Muscular Dystrophy Campaign only a little while ago, I was pleased to be able to talk to people going through similar issues such as social injustices and sharing the same interest for equality. The day was great fun, I learnt a lot and the desserts at lunch were amaaaazing!!
Anyway, many times I’ve had difficulties whilst trying to use public transport, denied part-time work because of so-called health insurances, having problems when attending pubs and other leisure places with friends (and the lack of leisure places for people with disabilities) or the difficulty when deciding which university was more suitable for me. Nevertheless, one other issue that affected me the most was the way I was treated in school and college. Most of it pushed me to do the things I was told I will never be able to do, but even so, these experience also completely shattered my confidence.
One particular experience in February this year at college gave me the drive to get involved and help do something about it. I was made to feel so inadequate and a burden to others when wanting to attend the annual college art trip to Barcelona. Having dismissed the trip the previous year due to an operation, I had all my hopes built up that the following year, I would finally be going.
I had no worries about the trip itself – I was told and reassured on the first day at college about all the support I would receive. A month before the trip, all things regarding me and my health was set (including how I would be staying in rooms with my friends yet there would be a young carer staying with the teachers, but also be there for me when needed. Sounds a little complicated, but seemed like a foolproof plan that worked and provided independence).
Yet, two weeks before the trip, I received a painful phone call from my tutor. Even though I had paid my share for the trip and acquired the specific health insurance needed, there was suddenly no carer. My tutor explained she didn’t know this was going to happen and that there were only two options, regarding what was good enough for my health and which also protected the college from liability:
A) I won’t be able to go and have my money refunded
B) My mum would have to come on the trip.
I don’t think I have to explain how horrible that felt. I had been discriminated many times in my life but this one was one of the hugest blows. I was 19 at the time and this was a trip with my friends that I wanted to have some sort of independence with. Where was the equality in option A? And where was the independence or dignity in option B?
I literally felt the only way I was able to attend this trip was if I miraculously got healthier. There I was, with only two weeks until the trip, pushing my exercise routine harder; calling everyone I know to get a reference that I was ok to go on the trip by myself. I did manage to go on the trip in the end, fighting that I was promised all this support and that I felt I wasn’t getting it. I had to argue that I’d prefer if someone came along just to help (and wheel me) when I got tired on long walks, instead of asking my friends all the time. Pretty much filled with frustration, I wasn’t going to let it go until something was done. In the end another teacher with first aid experience joined the class. What I did to go on the trip, I most probably shouldn’t have done and won’t say, but it was the only way I could go. I had enough of being excluded. This, travelling with independence, is something I would like to help campaign on in Trailblazers.
On to schools in general, bringing up the fact that people are different in a respectable manner (and not pinpointing one person or disability) in schools today should also be a priority to ensure young adults have an equal opportunity; something which is stated in the Disability Discrimination Act and is hardly followed. The idea that schools already provide video classes or assemblies for rights such as racism and gender, people of all ages should be educated in all of life’s concerns. This way, hopefully, some issues (such as the absurd complaints and ramblings from parents about how the Cbeebies presenter Cerrie Burnell’s disability “can give children nightmares”) can be avoided.
Currently, the issue affecting me most is the accessibility when going out to pubs and music venues with my friends. Just last week I ended up home instead of at a friend’s party. This was because the venue did not have ground floor toilets and there were far too many narrow, steep, handrail-free stairs to use (no lifts). With the actual gig happening upstairs and people who seem to be lying across the stairs or shoving others, there was no way I could go. The feeling that people with disabilities can not be spontaneous (whether accessibility or public transport) really annoyed me.
By joining Trailblazers, I hope that all the research and our personal experiences going into the campaign will help get rid of the obstacles imposed by society in the lives of anyone with a disability. I am looking forward to participate in projects at the office soon :-)