“Because there is no way for good people to admit just how bloody uncomfortable they are with us, they distance themselves from their fears by devising new ways to erase us from the human landscape, all the while deluding themselves that it is for our benefit.”
~Cheryl Marie Wade
Disability is usually defined by what a person cannot do. But outside of the normative social realm, disability is really about how a person does things differently.
Within the cultural status quo, the onus of being “acceptable” for consideration to being included by others, is placed upon the person in question, rather than by those who are creating the standards and are choosing to accept or not. Frequently, inclusion must be “earned” by first mastering skills that enable the person to do things normally. Unfortunately, those skills are often more about enabling the person to pass for normal, than they are about enabling the person to achieve their own needs. For example, when the disabled person is deemed unfit to socialize because others find them “too weird” in their mannerisms or communication, this situation actually demonstrates that it is the others have the greater difficulty in socializing. The disabled person carries the entire burden of being flexible, rather than both parties being flexible to engage in reciprocal socializing.
As a disabled person, one must pretend to be normal to avoid discomforting others and thus be acceptable. The noticeably disabled are kept at arm’s length because they are visible reminders of others fears of frailty, lack of competency, and loss of status. The invisibly disabled are included until they are outed, and then face the others’ sense of having been deceived. “Normal” is the status quo for not only being average and common, but also being okay and acceptable.
Disability is seen as synonymous with incompetence, rather than as a situation where one solves life problems by using different means. But disability is not about what you can’t do – it’s about how one does things differently. Using different and adaptive strategies to achieve has somehow been perverted from ability to disability. It’s disgraceful instead of clever to figure out how to type conversations, or to handle utensils with a foot. The disabled have to be flexible, but the others’ lack of willingness to be flexible is projected and reflected upon the disabled as a fault.
Inclusion in the community is viewed as a privilege rather than as a right. When people “let” someone be included as a favour, this is not inclusion, it’s marginalisation. It’s merely visiting the community, instead of living there and being a part of it. Their continued presence depends upon conditional acceptance, which can be denied at any time, demoting the disabled person once again.
Inclusion means being a part of the group, and being given such supports as are needed as a natural matter of course. When we have to advocate to get “special” education and “special” transit and “special” work accommodations, everyone feels bent out of shape; the nondisabled feel put-upon and slighted, and the disabled feel that they are being singled out for having to make a lot of extra effort to barely achieve their rights and the things they need for ordinary existence. Inclusion does not mean having to do everything the same way that everyone else does.
Sometimes people are taught that they must learn to do everything the same way that everyone else does so they will be competent, and can feel good about their accomplishments. But no one wants to work three times as hard and take twice as long to do something not quite as well as others, when there is an easier way to achieve the same end with satisfactory results. Putting all that effort at trying to “pass for normal” is an exhausting way to live. A person’s self-worth is not going to improve from by achieving competency in tasks that aren’t important to them, or by achieving tasks that are accomplished with all that vain struggle.
Moreover, the standards we have set are arbitrary — the significance of a task varies from person to person. One doesn’t have to tie shoelaces, walk on two feet or be consistently toilet-trained to be a happy adult who is part of their community. We cannot say that to have worth (and therefore be deserving of inclusion) that a person must be able to do tasks X, Y and Z. Personhood is not requisite upon abilities or upon “productivity” of some work-related function. Rather, people have worth because they are people.
When we realize that we cannot live our lives in the perpetual terror of worrying about what others will think, or trying to be what everyone else expects we “must” be, we are freed. We are freed because we understand that we cannot be such, that we are not just unable but also unwilling to comply. We cannot be defined as less than full people because we do not achieve things by the same means. We are freed because we understand that we cannot be complicit to our own marginalisation.
Disability can be liberating not only to those so affected, but also to the nondisabled. As those on the outside stretch the envelope of inclusion, those inside can expand their understandings of inclusion, self-identity and group identity. We can be made more aware of how our sense of identity, inclusion and community have been shaped by the implicit and explicit mores that created and perpetuated such limits. We can also become more aware of the paradoxes that handicap our interactions with each other, and prevent us from social maturation.
“Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’ …disability is an art. It’s an ingenious way to live.”