Thursday, 20 October 2016

Dear Able People: An Ableism Primer

Dear Able People:
An Ableism Primer
by E. Amato

Being differently abled can be a minefield. Daily life activities can be filled with frustration, fear, loneliness, pain, adaptation, challenge, and/or plain impossibility. To get through the day, people with ability issues need persistence, patience, flexibility and focus – many of which tend to be in short supply due to illness, chronic pain, mental health issues, and injury.

Still, life goes on, and people with ability challenges do remarkable things. Though blinded in a shooting incident in his twenties, theatre artist Lynn Manning toured shows around the world. Stephen Hawking has changed humanity’s conception of the universe from a wheelchair with a voice simulator. In London in 2012, a Paralympian zoomed past me on prosthetic legs.

Differently abled people find ways to get through the day, to become new selves, to express their gifts, and to thrive in circumstances that would make many people want to give up. This is what life should be – a journey of purpose to happiness, despite the odds and challenges on the path.

What life shouldn’t be is degrading, shaming, shunning, penalizing, and punishing. Yet every day, people who are differently abled face these in varying degrees. From micro-aggressions through job discrimination, able-bodied people bring consequences to disability that don’t have to be there.

We call this “ableism.”

We find it both harmful and unnecessary.

Perhaps you haven’t realized that this problem exists or know how it manifests. Here’s a quick overview of the problem, some of the issues, and some fixes.

1. What is ableism?

Ableism is the practice of assigning less value to persons who have disabilities.

Ableism can take many forms, including hurtful speech, denigration, rendering invisible or unseen, or not taking practical needs and parameters into account.  

Ableism can be as small a gesture as side-eye to the life-damaging hiring discrimination. It removes agency from individuals.

Ableism can be unconscious; for example, making assumptions about ability, capability, and mobility without creating an environment that allows for people of different levels of ability.

Ableism can take the form of the enforcement of “normal,” while discrediting those who fall outside this arbitrary assignation.

2. What is disability?

Disability is any state of not being 100% healthy in body and mind. It can be temporary, chronic, permanent, or, in some cases, terminal. It can be related to an illness or debilitating treatment or side effects from medication. It can be the result of an accident or injury. It can be the loss of physical mobility or the use of senses such as sight and hearing. It can be related to psychological health or an autoimmune condition. It can be any combination of the previously mentioned conditions. It may or may not be visible to you.

3. What is invisible disability?

So glad you asked! Not all disabilities are visually evident. Let me state this again: notall disabilities are visually evident. This is so important. People suffer from many types of illnesses, diseases, injuries and mental health conditions. Not all of these require wheelchair, cane or crutches. Not all of them are on display.

This does not mean the person you are looking at, who is able on the outside, is actually able. If they have requested assistance, if they are parking in a handicapped spot and have a handicapped placard, then they are handicapped as far as you are concerned. They don’t need to be questioned by you or reminded that it’s a handicapped parking space. They don’t owe you an explanation. They could have hearing problems, they could have a condition like lupus or fibromyalgia that can render movement painful. They could have a serious mental health issue. They could have a brain condition that makes balance difficult.

It doesn’t matter -- none of the above matters. What matters, is that they are not able, even if their disability is not visible to you. What matters is that it’s their body, which they live in and know intimately. They do not need to share their body and its processes with you if you are not their practitioner, caregiver, or very best friend in the world.

They do not need to be shamed, punished or penalized for their appearance of health. They are struggling. If you are making their way in the world harder, then you are policing their behavior and needs, which is no one’s place. Instead, try Plato’s advice: “Be kind, for everyone you meet is fighting a harder battle.”

4. What does ableism look like in the world?

In a fantastic open letter, Samantha Cleasby details a trip to the disabled bathroom marked by being “tutted” at by another woman. She is candid about her disability and her needs. Her medical condition essentially means she has no bowel. Cleasby still appears able – she is not in a wheelchair, she is able to run to the bathroom as soon as she realizes she is about to have a problem. These should be positives, but they leave her open to criticism, jeering, and even laughter.

Imagine this level of scrutiny every time you went to the bathroom outside your home. Now imagine living with pain, limitation, digestive issues, mess, anxiety about having accidents in public places, in addition to this level of scrutiny. It seems more than unfair – because it is.

A person who is differently abled may experience this type of encounter multiple times upon leaving his or her own home every day. The additional friction and tension of potentially difficult human interactions placed onto already overloaded physiological systems are unwelcome and can be damaging.

Most people who are differently abled learn to be up front about boundaries and limitations. This doesn’t mean they are going to tell you their health problems, but they will offer up what they can or cannot do when it’s applicable. Yet, this does not always produce the desired results. Refusing someone access to alternatives to stairs, or refusing to lower a bus when requested are ableist actions. Assuming that disabled people are lazy, rather than accepting that they are limited in certain areas, or in pain at that moment, or sometimes, or all the time is ableist.

Forcing people to beg in order to honor the limits of their own bodies, for your listening and understanding, or for you to give them what they need when it is completely within your power to do so is ableist. It is tiring to live with ability challenges; it is exhausting to continually explain, charm, cajole and plead for simple modifications.

Ableism looks like judging people by how you think they look, and what you think their level of ability should be – not what it actually is.

5. What does ableism look like in the workplace?

Ableism at work can include harassment, making jokes, and overlooking in favor of able colleagues. Ableism can take the form of not accommodating necessary modifications to workspaces or schedules for those who are differently abled.

Firing an employee while he or she is out on disability, or passing over those who have been ill or have struggled with mental health issues for promotions is ableist. Actions like these have major consequences on income, financial stability, and threaten consistency of access to health care.

Although the U.S. and other governments have strict codes and guidelines for persons with disabilities, these are not always fully honored, and the burden of proof is on the employee. In extreme situations of ableism, an employee will be forced to retain legal counsel and sue for his or her rights, either after termination, or while still maintaining a working relationship with colleagues and the employer. Suits like these are time consuming, anxiety producing, and draining. The multiple stresses to body and mind of unemployment, loss of income, harassment, loss of access to or increased cost of health coverage, added to the burdens that come with ability challenges can be devastating.

6. How can I help?

You are helping just by reading this! You are learning about ableism, disability, and its impact on lives – that’s very helpful.

You can help by not policing the behavior or stated needs of people with disabilities. You can help by accommodating those needs respectfully when possible. You can help by beginning a conversation around these issues with other able people.

You can help by listening to, learning and adopting the language used by the differently abled people you know. Alternately abled people have a variety of ways of referring to themselves and their condition. They usually settle on terms that give them the greatest agency. By accepting the language being used, you are reinforcing their personhood. When you choose other language, language that is debilitating or disempowering, you are overwriting the choices made by the person with whom you are interacting, which is tantamount to making them invisible, or infantilizing them. If you don’t know the proper language to use, ask. An open-ended, non-judgmental question is always welcome. It shows you are listening and you care. Be brave – the person you are talking with is, so you can be, too.

Finally, you can help by remembering that no one is infallible and everyone will have struggle or illness in their lifetime. Differently abled people are you, in a different body at a different time – treat them as you would love to be treated yourself if these were your circumstances.

…unapologetic feminist, dulcet-toned poet, activist, film-maker, editor of Zestyverse” (LossLit) E. Amato  is a published poet, award-winning screenwriter, and established performer. She has published three poetry collections through Zesty Pubs and is a freelance writer and editor, and a contributor to The Body Is Not an Apology. She got Marmite in her bag.

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