Monday, March 21, 2011

Question of the Week: Can You Say the "D" Word?

Poster by the United States Department of Labo...Image via Wikipedia
In my Mission 2011 post last week, I asserted that the key to fibro-friendly travel is:

"...learning to feel comfortable saying, "I am a person with disabilities and I require reasonable accommodations."
Apparently that was a difficult thing to ask of you.

So today I want to write more about why I think it is important to feel comfortable saying the "d" word, especially if you are a person living with invisible illnesses, like cancer, fibromyalgia, Hepatitis C, type 2 diabetes and dysautonomia.

There have been a lot of brave and courageous people who came before us that lead a disability movement demanding civil rights for people that are "differently abled." Their goal was to obtain equal access and equal opportunities for inclusion into society.

While many of these pioneers lived with mobility impairments and used wheelchairs, they also recognized that the disability community was a heterogeneous group consisting of persons living with a variety of different challenges, from blindness and deafness, to mental illness and invisible illness. They recognized that disabled people were a minority, a minority that anyone could join at any time in their lifetime.

They stood together and asserted their civil rights to ask that barriers be removed so that they could participate in society to the best of their ability. If you look around today you can see many of the fruits of their efforts: ramped entrances to buildings, curb cuts, disabled parking spaces and seats at venues, sign language interpreters and reading materials available in Braille.

You can also see their legacy in important legislation here in the United States, like the Americans with Disabilities Act of 1990 and the Family Medical Leave Act of 1993.

While those of us with invisible illnesses don't look disabled on the outside, we need to have barriers removed so we can live our lives to the fullest too.

While we come up with many ways to describe our illnesses, like chronic pain, chronic fatigue, etc., nothing quite has the impact as saying we are disabled. It is that one little word that can literally open doors for us that a lot of other words we use cannot. That one little word gives us clear rights to the reasonable accommodations we need to remove barriers. Plus it helps others in our society expand their definition of who people with disabilities really are, thus creating the disability culture that was the secondary goal of the disability movement.

That said, let me clarify a few things about what being disabled means:
  • Being disabled doesn't mean you need other people's charity or pity; it does mean you might need barriers removed so you can actively participate in society.
  • Being disabled doesn't always mean you can't work; it does mean you might be entitled to some extra help to be able to or continue to work.
  • Being disabled doesn't mean you have to put up with harassment; it does means that by law you cannot be discriminated against in activities like: work, housing, transportation, shopping and health care.
  • Being disabled means that your spouse or significant other can take time off work when needed to assist you and not have to worry about losing their job in the process.
  • Being disabled doesn't mean you always need help; in fact, as the result of laws and increased societal acceptance, it often means you can be independent and even offer help to others.
So this week I want to hear your thoughts about this topic. I want to know if you can accept the idea that your health challenges make you a member of the disability community. I want to know if you can embrace this identity or not. Can you say the "d" word?

Please feel free to leave a comment here on OMA&P! or over on the OMA&P! Facebook page.

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Watcher said...

I've never had a problem identifying as disabled. (I'm autistic so I have been disabled since birth.) As far as my EDS goes, I was uncomfortable for a while with calling it a disability, but as it became more symptomatic I became more comfortable with using the label. Now, I have the problem of getting my parents to stop downplaying it loudly when I do have to request accommodations or use adaptive aids.

kitty said...

This is a very interesting post - I struggle with the D word as my sister is a lot more disabled than me, and she has been for her whole life whereas I have only been ill for about 3 years. I guess I compare myself to her and just can't say it. Also I think accepting that you are less able than before, and consciously doing so is hard. I remember at my physio appointment a couple of weeks ago I said I look after my disabled sister and they said "Oh that must be hard with you being disabled too" I was liike "I'm not disabled.". I just can't do it at the moment but I totally agree with everything you have said! it's a journey of acceptance isn't it!

Emily said...

Hi Selena,

I have tweeted and posted this to my FB. Out to the "masses".

The way you write is the way I wish I could! My writing is honest, as is yours, but yours is also just plain excellent, i.e. you should write for the NYT!

Anyway, lol, I do not have any problem using the D word when I am not using any kind of assistance. I feel it educates people that someone with an Invisible Illness could be disabled.

It's one person at a time, but that's how we can change the world!

Selena said...

Thank you for all your comments.

It just stuck me how hard it is for those of us with invisible illnesses to say we are disabled. I used to work at a local Independent Living Center where many of the staff used wheelchairs and mobility scooters. For them, it was easy to say disabled, perhaps because they couldn't hide it, so they learned to cope and take pride in it.

It is a journey of acceptance.

It is also an important civil rights issue. You can't be protected by the ADA and FMLA if you don't take the risk and say the "d" word.