Nothing About Us Without Us: Disability and Global Expansion

December 3rd was the United Nations International Day of the Disabled. I didn’t post that day – I had mulled back and forth, forth and back over to post or not, and if so, what to post.

I wanted to talk about disability, on a global scale. I wanted to talk about disability and two thirds of the planet, about what is said: that two thirds of the planet are either graced with disability or will be – are touched in some way – either personally or by close connection (husband, brother, mother, best friend), so that makes a day like this really pretty special.

I wanted to talk about United Nations and the Convention on the Rights of the Disabled and how much that means to me. I wanted to talk about the slogan, “Nothing About Us Without Us” – a string of words so expertly crafted by another, yet straight from my heart.

I wanted to talk about the Disability Service Industry, the one that I was a part of for 8 years, and what it feels like to relentlessly butt heads with The System every*single*day, day in and day out. How it feels to write endless reports, endless and endless and endless so that someone who will never even remember your name (nor remember to say “thank you”) will be able to get something they desperately need. And then…to get calls from the Mamas that I now am, the Fierce Mama Bears that have been to one too many IFSP, IEP, IPE meeting, taken one dollop too much of bureaucratic shit and have had it. And have already rolled up their sleeves when talking to me, have already decided that I’m a cog in it all (true), already decided that I’m going to hinder (not true) and my hands would ache from all the typing and my brain would be straining to process all their words because hey, I’m disabled too, and I’d want to reach through the phone line and grasp that Mama by the shoulder and give her a gentle shake, say, hey – I’m on your side. Chill out.

I wanted to talk about how it feels to be sitting in a room, knowing that I am the only person with a disability present. To hear disability service providers talking, talking, talking about what “those people need” – how “those people can’t” do this or that and then in a sudden moment of clarity, realizing that this is exactly what used to happen in the US with race: a nice collection of white men (maybe a token white woman added) would sit around talk about what “those people”, those “coloureds” or “negros” “need” or “can’t do”. That in that blinding moment of connection, I was also filled with an inexplicable anger, an anger that few perhaps understood as I “pass”. I am the “high yellow negro”  from years past; I am the deaf girl with TBI, with a face criss-crossed with scars that somehow slips through. I can be taken for non-disabled. I usually am.

I wanted to talk about how my heart hurt in Cambodia, seeing more people with disabilities than I have ever seen before in my life. How inaccessible so much of the country is that people who use wheelchairs can’t even get out and about because they don’t have wheelchairs that can ride rough terrain, because their home is on stilts. How there is the sense of helplessness that I am sure was rampant in this country only 40 years ago (less!), that we can’t do something because we are disabled, and there, all I wanted to do was say, YES! YOU CAN! Your legs were blown off while walking over a landmine but YOU CAN WORK. For the nonverbal people that I met, I wanted so badly for them to have access to the technology that is more standard than not in developed countries – devices that help one to speak.

I wanted to talk about how I’d see people in China that maimed themselves or their children so that they would make more, begging.

I wanted to talk about the people with diabetes that I saw in villages in Fiji – with some bloated limbs or amputations, where education and care just were not there. When it could, should be. Whyever not.

And I wanted to talk about the utter joy it was to meet my people, my Deaf clan in Peru and in Thailand. How instantly connected I felt, how lovely and graceful I found their signs, their brightness.

I wanted to talk about how much needs to be done to make our world accessible to all, and I wanted to talk long and hard about the fact that this is NO PITY PARTY. This is not something that those without disability “do” for those that have a disability. Leveling the playing ground, making things one for all, all for one means that you gain so much more than you ever thought you could. Disability is a means by which we as one human race can push ourselves to new heights – we can challenge ourselves to new levels of greatness – by creating an accessible landscape, through universal design. By the development of technology. Technology for disability – it may start out specifically for one group of people (such as the telephone for the deaf) but it ends up being used by all. Same with universal and accessible design (hello, curb cuts!).

Including everyone means that everyone can add their creative spark, their intelligence, their unique view to this glorious picture we are creating called Our World.

And let’s make it glorious. Let’s include everyone in the making, the implementation, the viewing. Let’s have an intricate weave with all colours present, a multitude of texture. Let’s love this process, appreciate one other and all the individual, unique gifts that we – each and every one of us human beings – bring with us.

Let’s focus on our brightness and let it expand. Let’s allow our expanded brilliance to illuminate our particular place in the universe that we call “home”.

Let’s celebrate disability and all the opportunities for growth it presents. Let’s celebrate each other, in all of our individual and collective awesomeness. Let’s renew our vow, or pledge anew to do what we can shift the paradigm of prejudice or stereotypes regarding disability. Let’s promise to try to treat people, all people, as they are, people first. Not conditions, not diseases, not broken pieces, not piteous, not inspirations, not supercrips or happykids or anything other than simply:
people.

Happy International Day of the Disabled, my friend.

Meriah
is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).
She likes her coffee black and hot.
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I'm opinionated, friendly & chatty... I hope you are, too