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July 14, 2013
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'Disability' is not 'deficit'.

Journal Entry: Sun Jul 14, 2013, 8:23 AM

Today, July 14th, is Disability Awareness Day.


People who do not have disabilities are fortunate in some ways; for example, they don't have to worry about whether they will be able to exit a burning building, wake up with excruciating pain, or have to choose between purchasing expensive medications that can keep them alive and paying their rent. However, please do not pity those of us who do, for having a disability does not automatically make someone less "lucky" than others.

It has nothing to do with luck.

I realize from firsthand experience that having a disability is extraordinarily challenging. Living with pain, as one example, must be beyond imagination. Living with suicidal thoughts and not knowing whether you will wake up in the morning because of all the medications you have to take for your disability is terrifying. It takes a lot of strength sometimes just to get up in the morning and face a day that is undoubtedly going to bring challenges that other people don't have to face. But, most of us still do not want to be pitied.


Please, also, stop calling us "disabled people."


Calling someone "disabled" basically defines them (as a person) by their disability by putting their disability first. No. I am a person first, and I live with a disability. By using empowering language, we empower people. It seems like semantics, but think about which sounds more empowering and respectful of someone's Self: "disabled" or "living with a disability"?

My disability does not define me, but it is part of who I am. I live with it, am stronger for it, and move forward with my life because there is simply no other choice. 

So please, yes, have mercy and try to understand, but don't call me "you poor thing."


What is a disability?


This might surprise you. According to the Americans with Disabilities Act (ADA), a person living with a disability is defined as one who has:

A physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.

The ADA, which is a huge milestone in civil rights law for people living with disabilities, does not specifically state which conditions are covered, but it can potentially be anything from asthma to schizophrenia to amputations to blindness to multiple sclerosis.

The key here is the "substantially limits one or more major life activities." So, in many cases, the proverbial playing field is simply not level, and people need and deserve some level of accommodations to help them thrive like everyone else. Does that mean we are weak? No. It is kind of like being a square peg trying to get through a round hole in certain situations.

(Disability can also be situational, or it can be universal. A person may be able to cope or perform perfectly well under most circumstances but need an accommodation in certain others.)


How do we approach understanding, then?


Stigma comes from not understanding. If you've never lived with a disability, it's really hard to know what to say, what not to say, and what people who do live with disabilities need and want. I can understand (but do not condone) how people might get frustrated with us at times, considering that they cannot possibly understand. 

So, let's be explicit. My best advice for someone who does not live with a disabling condition would be:

Ask us what we need, but do not assume we need "help."

I think that a lot of the times we feel uncomfortable asking people about things that are obvious impairments because we don't want to embarrass people. We were raised with "It's rude to stare" and "Mind your own business." But, it is okay to say to someone who has a physical impairment, "Can I get the door for you?" or even "Are there any accommodations that you need?" But, wouldn't you want to ask that of everyone? I realize there will be some disagreement on this point, and I maintain that this is only my perspective.

What about disabilities you cannot see? These are trickier because you usually don't know they're there, so my advice is really simple: Treat everyone like a human being. Do you have good and bad days? (If not, please come see me because I want to study you.) Thought so. Believe it or not, everyone else does, too. Regardless of whether the person you are interacting with has a disability, they deserve and will appreciate your empathy and your meeting them at a human level.

If you do know that someone has an invisible disability-- fibromyalgia or a mental illness, 
for example-- then my advice is still just to treat them like a human being. You can ask, "Is there anything you need?" but do not automatically assume they are at a deficit.

Bottom line? Most people with disabilities do not want to be treated any differently than anyone else. We don't want special privileges. We just want understanding and fairness. :heart:

Ask questions if the person is amenable to it.

Of course, it depends on the person with whom you are interacting, but I would say from my experience that most of us don't mind talking about our illnesses and helping others understand. Asking questions and improving your knowledge helps combat stigma. For me, I would do anything to help relieve stigma. But, if someone doesn't want to talk, don't push them.


On responsibility


One more thing. Having a disability-- regardless of how much pain or anguish one is experiencing-- does not give anyone license to be an asshole. It also doesn't give a person license to take advantage of people and situations. While my own disability can make me grouchy and irritable and more likely to snap at someone, being downright mean and hurtful is a choice I can choose not to make. As people who live with disabilities, we have to be responsible for our decisions, good and bad, just like everyone else does.

We also have the responsibility to stand up for ourselves and use our disability not as a crutch, but as a tool for helping people understand that the mere fact of having a disability doesn't make us "less than" anyone else.

It should not fall on us to help educate others about what it is like to live with a disability, but, for better or for worse, it does. Whether it be by living your own life as strongly as you are able or being a voice for others who live with disabilities, don't be ashamed of WHO you are-- for that is very, very different from WHAT you have.

Also visit Arts-and-Health, which we are reopening today.


Peace,

Jade (Aeirmid)


July 14th is Disability Awareness Day
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:icondrizztg7:
DrizztG7 Featured By Owner Mar 16, 2014
Cue really long post -

I am physically disabled. And the "assuming that we need help" thing happens a lot. It leads to unwanted pity or people looking at me funny. Now, I realise that it's different depending on the person. But I'm just saying here what applies to me in my specific case. At first, I understand the sentiment behind it. People see something they arent use to and instead of openly gawking, they think they are being kind by assuming I need help. However, having lived 20 years faced with the same thing, almost daily, let me tell you. It is tiring and wearying. There are only so many times I can reject "help" or pity, without being an ass about it. Even at my place of employment, I have had customers come up to me asking if I needed help doing MY OWN JOB. I have also had children openly gawk and ask me "if it hurt being like this." My favorite was when a young girl asked "If I poked you, would it hurt?"  But the children I accept and understand. While parents pull them away, I stop them and answer the children's questions. Clearly they have not been exposed to different people, and I am more than willing to teach them that we are people too. The adults, I find, more more ignorant. And not all of them, thankfully. It's only a few, but enough to be frustrated by the lack of education. They have said to me, "but it must be so hard to live your life." When I respond "What do you mean? My life is fine." It seems to blow their mind. I've had people offer me money or candy, thinking that because I look different physically, I must be childlike in my mind. Or the ones who won't even look me in the face, that probably is worse than anything else. It's as if I'm not even a human.

I'm not trying to write a "pity me" comment. I'm just stating some challenges that I personally go through and perhaps others  might identify with as well. I am perfectly happy with who I am. If I wasn't different, my life would be drastically different, and I personally like where I'm at now. I drive a nice car, I'm in college on track for computer engineering and computer science. I tutor people in maths and English. My life is normal. All I ask is to be treated like any other adult would be treated. I don't want anyone's pity, I don't want help unless I specifically ask for it. And I guess what I would say to those who are not sure how to treat "different" people.. Treat them the same as you would anyone else, unless they specify otherwise. Everyone deserves respect and dignity. People should be seen who they are on the inside and not based on mental or physical differences. If you have questions, most people are happy to answer, but please don't be ignorant about it.
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:iconaeirmid:
Aeirmid Featured By Owner Mar 17, 2014   Digital Artist
Very well-put. Thank you for sharing your story with us! :tighthug:
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:iconrainiila:
Rainiila Featured By Owner Sep 18, 2013  Hobbyist Digital Artist
Call me naive and stupid and whatever, but this year was one of the first times I actually hung out with someone with a disability. I was actually pretty surprised at how normal the boy is. I never regarded people with a disability as less then the normal person, but I guess I assumed that they would... Really weird or something. *shrinks in shame*
Either way, I'm glad I've seen how normal people with disabilities are, and how it doesn't rule their life. 

Reply
:iconaeirmid:
Aeirmid Featured By Owner Sep 18, 2013   Digital Artist
Thanks. :)
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:iconx-pixel-pusher-x:
x-Pixel-Pusher-x Featured By Owner Jul 17, 2013   General Artist
While I do agree completely  my problem is of a different kind. Having been diagnosed with Crohn's disease, which obviously can't be seen, my biggest niggle is when people assume you are able, because they see no physical defect or ailment that they can allow in their tiny brains to fall under the heading Disabled!
When people label me because of my condition then I don't give it a second thought. Why? when its obviously wrong and demeaning. Because they are ignorant, and because my time is to precious. These kind of people don't deserve any of it. :) Well that's my little rant over. Live Love and Laugh!!!
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:iconaeirmid:
Aeirmid Featured By Owner Jul 17, 2013   Digital Artist
So agreed. :heart:
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:iconstory-of-a-mind:
Story-of-a-Mind Featured By Owner Jul 16, 2013  Hobbyist Writer
I strongly agree with the title. My aunt had epilepsy, so she couldn't get a driver's licence. So she simply went everywhere with her bicycle or by foot.  She couldn't sit in front of the computer for too long a long time either. So she simply did other things she enjoyed. In the end the image that stayed in my mind was that in fact, the things she could not do did not make her miss something, but instead made her live richer.
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:iconaeirmid:
Aeirmid Featured By Owner Jul 16, 2013   Digital Artist
that's a beautiful way to think of it.
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:iconunicornomics:
unicornomics Featured By Owner Jul 16, 2013   General Artist
If only the douches in Hollywood would bother to read this before making disabled people into props -Cough- Rainman -Cough-
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:iconaeirmid:
Aeirmid Featured By Owner Jul 16, 2013   Digital Artist
ugh. I know.
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