When people say that they don’t associate the word “disability” with me or with Moxie, I think they mean it as a compliment. It certainly has that tone. “I don’t think of you as having a disability!”
I’m not insulted by these statements. I sense the love for us behind the words, I don’t take it personally.
But it’s not really okay.
Because, you see, we do have a disability. Moxie has Down syndrome and I am deaf and I have PTSD and TBI. Moxie has already had intense discrimination leveled at her despite her being only 4 years old. Indeed, her very name was chosen on the basis that she had already earned it by the time she was born.
And I have been fired from jobs for not being able to hear. I have had a very difficult time with school, relationships, self-esteem and life in general on the basis of my disabilities.
I am intelligent. So is Moxie. I have a decent education. Moxie will too. I can walk, so can my daughter. And we both have a particular way of hearing, perceiving, thinking and feeling that readies us for a lifetime of discrimination and prejudice. We are both prime candidates for being sexually and emotionally abused. In my case, I was; in Moxie’s case, I’ll give my life to ensure she remains safe.
We both have a disability.
At this point in my own sojourn on earth, I am proud of the fact that I myself have a disability, and it is part of my identity. I look back on my past and view struggles that I have had by dint of my (lack of) hearing or the way that I think or feel and I know I’ve done well. Not despite my disability; I’ve done well because of my disability.
Which is to say: I have always wanted to experience life fully – the good, the bad, the full spectrum.
There is no way I would ever have experienced life to the extent that I have were it not for my disability. I would never have known how it is to be discriminated against, the way that prejudice feels when it’s aimed at you. I wouldn’t have developed the tools that I employ daily. I wouldn’t have become as intuitive, observant and perceptive as I have, had I not been disabled.
Our having a disability is not an assessment of our ability
It’s merely a statement of fact in the way that we think, hear and feel. No more, no less.
So instead of saying “I don’t think of you as having a disability!”, you might want to say something more along the lines of, “and you have a disability.” It’s not something to be ashamed of. It’s not something that I’ve overcome. It’s not something that is meant to inspire. It’s like the color of my skin, the curl in my hair; it’s simply a part of who I am.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
Those words are all about keeping disability separate. They’re a way of saying I can relate to you, and I can’t relate to disability, therefore I can’t think of you as disabled. I get the “he doesn’t even look like he has Down syndrome” or the “he’s doing that like he doesn’t have Down syndrome” regarding my son. And I’m trying to get better at not just nodding, but responding, “Actually, he does have Down syndrome, and he does look like/act like this, so this IS what one person with Down syndrome looks like/acts like.”
I never thought of it like that… (“I can relate to you and I can’t relate to disability, therefore I can’t think of you as disabled”)…but I think you are right.
I find it really difficult using the word disabled about my son. He is no less able than the next person, he just happens to have a hearing loss. I much prefer the term used in my native language, Swedish, which is “funktionsnedsättning”. A straight translation of that term would be something along the lines of “reduction of function”. Possibly not the best way to express it in English but I find “disabled” so full of stigma.
I agree – “disabled” is full of stigma. My personal favorite new word to describe it is “alterability” but that’s far, far from mainstream. For better or worse, “disability” is the word that is used and acceptable by people with disabilities, the government, etc. So it seems to be easier to associate the word with positivity, rather than look at it literally.
Your son who has hearing loss is the same as me. We are perfectly capable people and we will accomplish much in our lives. We will also accomplish much BECAUSE of our hearing loss, because having hearing loss will sharpen other skills and abilities. But we also have rights that come with our hearing loss, and “disability” covers that.
You Swedes always seem to be ahead of the curve – what are your laws regarding disability? Disability/employment/education?
Oh I like “alterability”! Great word, but as you say, probably not very well known.
All in all I can say I’m very thankful to be living in Sweden, of course there are things that could always be better and work smoother but on the whole Sweden is a good place to live if you have a child with disability, or a disability yourself. There are a multitude of laws regarding disability; social welfare, health care, right to assistance, support and service to certain people with disability (on the more severe scale of disability), accessibility regarding private housing and official buildings and places, education, work environment and discriminatory laws. Parents of children with disabilities are eligible for a care allowance (which unfortunately is very arbitrarily handled by the Social Insurance Agency. I fought our case in court, and won.)
When it comes to hearing loss and children there is a great support system, both for the medical side as well as the rehabilitating side (auditory verbal therapy early intervention, sign language). Everything from hearing aids, CI’s incl surgery and after-care, batteries and FM-systems to all hospital visits and rehabilitation visits are free for children up to 19 and after that hearing aids and CI’s are heavliy subsidised. Interpreters can be booked for free for most social occasions, hospital visits etc. Swedish sign language is recognized by the language law as having the same standing as the five official minority languages (Sami, Finnish, Meänkieli, Yiddish and Romani Chib) and there is free sign language education for parents (but nowhere neat enough to actually learn the language).
With all this said the laws could be sharper, society could be more including, unemployment is high for people with disabilities (people with hearing loss are less affected by unemployment), there could be less arbitrariness regarding care allowances and more hours dedicated to learning sign language.
We have so much to learn from you. Hearing aids and cochlear implants are not usually covered by insurance – it was horrible trying to afford them. I was also caught in many of those catch-22 waves – I needed hearing aids to work and couldn’t get a job without them. I never want to go through anything like that again, and I don’t want anyone else to have to, either.
Is unemployment for people with disabilities high because employers don’t want to hire them, or because of access, or because people don’t want to? In the uS a lot of people with disabilities don’t want to because if they do, they can lose their medical insurance and then if they lose their job or their job health coverage changes, they are going to be screwed.
Can’t imagine what that would be like, not being able to afford something you really need. This is something my son will never have to worry about and that is a great comfort for me as his mum. As for high unemployment, and I’m surmising here, I think it’s a combination of accessibility and cost for the employer (having an interpreter is costly, even though the employer can apply for funds from the Social Insurance Agency) and a good social welfare system for the individual. The social welfare system is good here and people don’t have to rely on private insurances or job health coverage. Financially there is no risk taking a job over having a disability grant so I don’t think the high unemployment rate is a result of people not wanting/daring to work.
I wonder what it is. I am really curious. In the US, it’s so clearly about health care and access.
I’m really glad you will never worry about that, or your son (- needing something and not being able to afford it). I wish all countries would copy a page from Sweden with regard to that. I visited Sweden when I was around 21 – my great-grandmother’s family is from Vaxjo (I doubt I’m spelling it right – the island off of Stockholm that is officially part of Finland now). When I was there, I stayed with a Swedish friend who had lived with me in Macau. She was a university student and I was STUNNED by the help she and everyone else received from the government. Subsidized necessary food! I think her education was free too. And free birth control! I had never seen anything like it.
To me that means that what ever different ability you have doesn’t factor in to the things that make us friends any more than your hair color, height or handed ness.
Hmm. I must have put that poorly, because I certainly think having a disability does factor in friendships more than hair colour, height or handedness. I mean, I just literally can’t be friends with people who continuously mumble or look down, I can’t be friends with people who get annoyed repeating things. It’s much easier if people know how to lipread and/or sign.
It also factors in because I know that people who are friends with me – or I with them – value our particular outlook on the world that comes with our disability.
I think the main thing I wanted to convey is that we DO have a disability. And maybe some people should think about how they frame “disability” in their minds if they automatically reject the idea that Moxie and I have disabilities… you know?
Not giving extra weight to the difference does not mean I don’t respect and accommodate our …. Communication or other interactions to suit our situation. Also- I wouldn’t be at all deterred if I thought I handled a situation badly asking you what to do next time. I’ve asked friends who stutter if I should just say the word or wait and a student on wheels if I should help with doors. Both times the answer was ‘depends’. Not helpful in the moment for me- but freeing both to ask when and if the need arose
I i get All The Time ‘you’re autistic? You must be so high functioning. You’re the highest functioning I’ve ever met.’ Also not a compliment. But a deminishment in much the same way. My brother is really autistic, but i’m not the same animal.
If the other person mumbles/looks down/gets irritated — that’s THEIR characteristic, not yours. Someone who exhibits these characteristics is not “seeing you as non-disabled”, but simply being inconsiderate, just as a tall person sitting in front of a short person at the movies is inconsiderate, not “seeing them as non-short”…. I have friends who have different needs in our interactions. Some are more flexible than others. I’d like to think that someone who “doesn’t see you as disabled” simply sees the accommodations you need as analogous to those we would extend to any other friend.
yeah, that would be nice. But I don’t think that’s the case. I mean, I don’t think it’s said with a thought of my accommodations, it’s more, I think, as a previous commenter suggested – that they can relate to me, they can’t relate to disability, so they don’t see me or Moxie as having a disability.
I think it’s more about the perceptions of what having a disability is.
Love this post! I’m a bit of a glass half full kind of gal, so I actually look at my disability as a kind of superpower, as it has given me many gifts, as well as taught me perseverance.
Recently I have taken part in a #SuperVoices campaign, exploring the abilities that our disabilities give us. In case you are interested, here is a blog post on the campaign: http://realwheels.ca/2014/11/whats-your-superpower/
thank you so much for sharing that link, Emme! I can’t wait to read it and I do agree with it – I think we all do have skills/talents that are ours by virtue of our disability.
🙂
As a teen with hearing loss, I feel the same way. When my friends say that it means they know me so wholly as a person they don’t think about my disability. If random people say it, my thoughts are more mixed because I don’t know them as well and tend to interpret as that they don’t understand the realm of disability or do not think of hearing loss as a disability because it affects older people as they age.(Someone actually told me that when I was 9) I do have a disability and Im proud of it. I wouldn’t be the same person without it.
word. I’m with you
That statement is like saying to me…
“I don’t think of you as an INTJ.”
“I don’t think of you as an ENTJ.”
“I don’t think of you as an ambivert.”
“I don’t think of you as a Keirsey Rational.”
“I don’t think of you as a MelChlor/ChlorMel.”
Yes, I am an INTJ. I am an ambivert, Keirsey Rational, MelChlor, and several other things as well as autistic. Every part of me is an integral part of me whether you see it as such or not.
I get that from people too… people will say that they cannot tell I’m autistic, as if it is a big compliment. I want to say, “Really? Because I can hardly tell you’re neurotypical! Are you sure you are? Have you been evaluated?”