Changing faces changing places: my journey from troubled teen to confident woman – disability matters

As those of you who follow via. social media will know, I have been taking part in a fantastic series of lectures at the London College of Fashion (here).  Being very passionate about inclusive fashion, I was fortunate enough to be invited along.  In the last few weeks I have learned so much, and this will be just the first of many articles inspired by the works of the Better Lives Project.  Before I embark of trying to change the world from my little corner of the blogosphere, I wanted to share with you why I am so passionate about such matters.
A little more about me
From my blog content it is pretty easy to discern that I am a wheelchair user.  This hasn’t always been the case, but as my plethora of conditions are degenerative, this is not something which will be changing any time soon.  Part of these conditions is what I fondly call ‘wonky bones’ and is linked in with EDS (Ehlers Danlos Syndrome).  I was born with hip problems and went on to experience acute back pain as an adolescent and beyond.  What was more obvious to my classmates was a rather major deformation in my jaw.  I never really understood what was wrong, and the NHS as great as they are (?!) never really explained.  All I knew was that from a young age I had to attend lots of medical appointment and undergo lots of painful procedures.  I had braces from age 9 to 19, which is pretty common nowadays, though not so much back then, and I had to cut up all my food before I could eat it, as I couldn’t actually bite or chew properly, as my top and bottom teeth didn’t meet.  I can’t show you any photos from this time as I wouldn’t allow them to be taken, even though I had my son before the corrective surgery at age 18.  The handful of pictures I have that were taken from the front look pretty normal, but from the side it was a whole different story, and names like Frankenstein and goofy were on the tame end of the spectrum.
So, I was bullied pretty much from the time my bones grew and I began to look different.  When I was very young I looked sweet and pretty.  My mother stopped getting the school photos after a while.  Along with some pretty horrendous life events, the bullying turned me from a very chatty, confident almost precocious child into someone who made damn sure she looked at the floor and didn’t catch anyone’s eye.  During this time alot happened, and my senior school years were marred by an eating disorder and a suicide attempt.  Things seemed pretty grim.  Due to my poor self esteem, I was also targeted my an internet paedophile, but I can’t really talk about that.
Flash forward to now – age 31.  Things are certainly looking up.  I had the surgery to correct my jaw, but I still saw myself as a freak, and didn’t have the right people around me to tell me this was not the case.  My back pain and other physical problems continued to degenerate, especially as I’d had my children so young (I had both my children by age 19).  One of my conditions effects the amount of collagen in your joints, and pregnancy floods the body with collagen to prepare for pregnancy.  The inevitable side effect was that the problems with my joints got much worse.  I started using sticks to walk, but after many years I am pretty much confined to my wheelchair.
The thing is though, that’s ok.  Not struggling to do things that are beyond my reach means less pain and fatigue.  Using the chair rather than sticks means that I can travel further and stay out longer.  I don’t need to be stuck inside my house so as not to inadvertently injure myself (which used to happen alot).  Strangely, it has given me a life back.  After all those years of seeing myself as a freak, I am not old enough and wise enough to see that my physical limitations do not define me.  Simply knowing this, and finding a good man who loves me just as I am, wheelchair, disability and all, has really given me wings.
I have begun to realise that my only limitations are the ones in my own head, which are still there in part, and I am working hard to rid myself of.  I tried recently to complete my unfinished degree, but was unable to keep up with the hours, sleeping every hour I wasn’t studying.  It was to taxing on my body.  With time to regroup, I would like to start again using distance learning, either with the Open University or distance learning with a physical University.  I love to learn and discover.
Me and my fiancee
I also adore blogging.  I love being able to set up and write whatever moves me, and have people tell me they got something from it.  This is especially true of wheelchair accessible fashion.  No clothes are particular ‘wheelchair fashion’ as such, it is just an abbreviation I use for a collection of clothes that look good and work well on a person who has to be sat down all day.  As anyone who has read my wheelchair fashion posts will know, there are certain things to consider when putting together an outfit for a wheelchair user, and they will not be the same as an outfit for a person who will be standing for the majority of the day.  I would like people, especially young people to know that being in a wheelchair is not the end.  That so many things are still possible, and being fashionable like your friends or in your own unique style is such a great place to start.  What we wear gives us identity and self-esteem, two things which can be lacking when facing the prospect of life in a wheelchair.
It’s possible to be disabled and still sexy
In conclusion, I want to shake things up.  First in my own life, but as two of my passions are communication and fashion, sharing my knowledge and paying it forward is a huge part of what I’m about, and makes up a big part of my own wellbeing.  Me helping others helps me, if you will, even if it is only helping to find the most awesome wheelchair friendly jeans.  I have met some amazing people recently, who are part of some groundbreaking initiatives.  I’d like to tell you a bit more about what they’re doing to empower wheelchair users, and anyone who is considered ‘different’ by wider society, and I hope to be able to tell you how I am contributing too, in my own little way.
Do you have experience of disabilities or disfigurements, in yourself or in family and friends?  What do you think we can do to empower those that society deems ‘different’?  What can we teach our children so those difference stop mattering in generations to come?
 

32 thoughts on “Changing faces changing places: my journey from troubled teen to confident woman – disability matters

  1. It is fantastic that you are not only blogging about this but also getting out there and doing it! You are very inspirational and wish you lots of look achieving everything you want to.

  2. 'Wonky bones' is my term for just as you have said, the frequent dislocations, though you and I know this is not caused by the bones themselves. I am pretty well read on all my conditions these days, but rather than sound like a medical dictionary and describe each diagnosis and what it means, I just touch on them, as they are not really the issue at hand. Hope that explains a little more 🙂

  3. I think that we need more people like you… open and wanting to share…
    My Mark worked with disabled people most of his adult life and so many of them hide in their shells … all the time, everyday, no matter where they are , they will not interact or open up
    I hope this will change one day

  4. What a lovely, honest and inspiring post.

    I love your wheelchair fashion posts and I actually think you should make more of a thing of them as I'm sure they inspire lots of other wheelchair users. You always look fantastic and you've got a great sense of style – in fact, I think you should come and style me 😉

    Keep doing what you're doing lovely x x x

  5. A very honest and inspiring post. It is so hard not to let the bullies affect you especially when you're young and don't have the skills to deal with it.

  6. What a sad and Happy story rolled into one! I am so pleased to have read your life story so far, You look stunning on the picture by the way, I wish I could get my eye makeup as good! Such a positive and inspiring post, Thanks Vicky xxx

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