People with disabilities, particularly those with invisible disabilities face many challenges that can be hard to come to terms with. Often, it is up to us to come to a place of acceptance and understanding without much, if any support.
It is up to us to become experts in our condition, to struggle, usually for years if not decades, to gain access to the support we need that might allow us to become active members of society and it is up to us be our own advocates on top of all the other difficulties we already face. We might not even be sure that we want to claim the title ‘disabled’ for ourselves and accept the social stigma and negativity that often comes with it.
On a day to day basis I do not think of myself as having a disability. I have EDS, I have chronic intractable seizures, I have brittle asthma and a few other things, but I do not wake up thinking of myself as a patient either. I wake up tired and in pain, feeling like a truck just run me over, but I have always woken up feeling terrible so that isn’t even my first conscious thought of the day because it is just another ordinary day for me.
I wake up and I also feel just like every other person who is not a morning person. I stumble out of bed (with or without help, with or without falling over and lying on the floor for a while before getting up and carrying on) and after ‘morning’, the next word out of my mouth is ‘coffee’.
Some of the thoughts in my head is as trivial as those everybody else have. I think about the itinerary of the day and the week, I am surrounded by the chaos of a house with a 3 year old and two cats living in it and I sit in the lounge and drink coffee and check the day’s news on-line before I do some yoga, spend some time on the exercise bike and then get dressed.
I think about work, about getting my daughter to nursery, about plans we have with family over the weekend and I have conversations throughout the day with friends online.
I read a lot, both on-line and on my ereader (currently trying out Paladin of Souls by Lois McMaster Bujold) and listen to audio books. I enjoy going to the cinema (at the moment the most said sentence in the house is I am groot!, even by my 3 year old who no idea of the context).
I love long isolated walks in the rain. I am Sylvia Plath admirer and the most proud owner of a physical copy of her children stories’ book. I love swimming and video games and I am again trying to make time to play them more often.
I love travelling despite it being very challenging and I think using loose parts for play is awesome. I am first and foremost, just a person like every one else. I would like my life to be about these things, above everything else.
The challenges, the barriers, the at times impossibility of accomplishing the above is like a layer added over the top and at time, it is suffocating, but it should not be what defines me and it most definitely should not be the things on my mind all the time.
We have made progress over the last decade in facing these barriers with determination, courage, persistence and an optimism that occasionally wavers but always returns. I will not be someone defined by what I cannot do. I have learned life skills, coping strategies, ways of living and we are actively working very hard towards changing the immediate environment around me to be enabling and not disabling.
Life is a fine juggling act and there is always the risk that these things that I strive to overcome swallow up my all of my life. Keeping it in check, overcoming what I can is tricky. My 24 hours are filled with activities I cannot accomplish without help. Each activity, including the simple things like getting up after sitting down, comes with a list of complications that vary constantly and the impact is so complicated that a lot of my time is spent trying to come up with innovative, affordable and hopefully permanent ways to overcome them.
I don’t want be just a person with a disability. In an ideal world, I don’t want to be a person with a disability at all. I want to be equal to everyone else despite being a little different. I want to go about my day like everyone else do, without constantly worrying about whether I will be able to and desperately trying to plan ahead to make every little activity in my life possible.
The world is quickly becoming a more accessible place and thanks to affordable technology, there is much I can do to make my life more about the things that I can do. I am excited about what the future holds for people like me and I am hopeful for a future for my daughter where she will not be marginalized into the fringes. I want her to have a career, a family, a social life, friends, success, happiness, a good education and I want her to be able to choose what she wants to do with her life without the limitations that inadequate support, a poorly designed environment and social attitudes with the arbitrary restrictions impose.
I don’t want life to be easy, it is hard and it should be hard. I just want it to be a little bit easier so that more things that are now impossible become possible. I want to focus in my life to be on what I can do, on solutions and positive endeavours. Life is so short, the time we have to spend with loved ones so precious, I don’t want to waste a second of it. I have more than one story to tell and the others are so much better.