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?
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.
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.
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.