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Preconditions, Burdens and Ableism

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Reprinted with the kind permission fo Jennie Spotila and Occupy ME.

By Jennie Spotila

Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or limit it.

Identity is on my mind in the wake of the House of Representatives’ passage of the American Health Care Act. (Here’s a summary of why this bill is so bad for people with disabilities.) Under current US law, insurers cannot refuse coverage if you have a pre-existing condition, and they can’t jack up your premiums for it either.

But under the bill passed last week, more than 130 million non-elderly Americans with pre-existing conditions will lose the protections they have today. Within hours of the vote, Twitter and Facebook were flooded by posts with the hashtag: #IAmAPreexistingCondition. Even celebrities chimed in.

The hashtag is powerful, because it attempts to put faces to all the health problems that we have. Denying health care for pre-existing conditions is denying health care to people. But I will not say: “I am the pre-existing conditions of ME, POTS, and thyroid disease.” I have those conditions, but my health problems are not my identity.

We have to be careful and precise in choosing language. Why? Because changing one word can change the meaning of a sentence, or a protest. I am have a pre-existing condition means I am a person with a complex identity. I am whole and complete, and my disease has not reduced me to just my need for health care. We are not a list of medical words.

We’re all prone to make mistakes with language at times, including ME allies. In describing people with ME, Llewellyn King recently wrote:

They are living a life that is a nearly intolerable to themselves and a massive burden to their loved ones, spouses, parents and caregivers. . . [ME] is vicious and debilitating, leaving the patient confined to a marginal life, a parallel and unequal existence.

I reject this description. I understand that King was trying to convey the devastating suffering of people with ME to a non-ME audience. But that quote makes me nauseous. My life is not a massive burden to my family, and my life is not marginal.

I have ME, and I am disabled. These facts do not make me less of a person. I can’t do all the things a healthy person can, but that does not make me a burden. I can’t participate in life the way I used to, but that doesn’t make my life less worth living.

Describing people as burdens, as marginal, as a list of conditions – this is ableism. Intentional or not, this language communicates that our illnesses make us less than. It reduces our identities to the diseases we have, rather than the people we are. And it tells us that a life with a disease or injury is not as valuable and worthy as a life unaffected by disease or injury. It’s reminiscent of the controversy over the film Me Before You, which romanticized the main character’s choice to kill himself because he is quadriplegic, despite his admission that he could still have a good life.

The intersection of disease and identity shifted with The Denver Principles. These principles, created by a group of AIDS activists in 1983, changed health care and how people with diseases perceive themselves. The Principles begin with a declaration:

We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term which implies passivity, helplessness, and dependence upon the care of others. We are “People with AIDS.”

That declaration is true for everyone with a disease. We are people with a disease or a pre-existing condition or a disability. Terri Wilder taught me this when she said:

I’m not a patient 24/7 days a week. I’m a sister, friend, and daughter. I’m a person first and should be referred to as such. Using person first language is respectful and acknowledges that while ME is a part of my identity I’m not an illness and am only occasionally a patient in a medical provider’s office.

So let’s stop saying “I Am A Pre-existing Condition.” Let’s reject descriptions of ourselves that reinforce the stereotype that we are burdens, that we are marginal, that we don’t matter, that we are not people.

Because I am a person. I am a person with ME, and I deserve the same respect and consideration as everyone else. ME is a part of me, but it is not my identity. Me comes before ME.

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2 thoughts on “Preconditions, Burdens and Ableism”

  1. AuntTammie says:

    While I understand the points this article is trying to make, & I would have agreed with them wholeheartedly several years back (before my illnesses progressed to the points they are now at), I find that they are actually invalidating to me now. I say that because only those whose illnesses &/or disabilities still allow them a life can possibly feel like their life is not marginal.

    The definition of marginal is, “relating to or situated at the edge or margin of something” & for those of us who are so sick we are cut off from the world, our lives ARE marginal. We ARE situated at the edge of “real life” and many of us struggle to relate at all to what a so-called normal life is like, or even a sometimes-normal life.

    And, financially, the hard truth is that many of us ARE burdens on our families. And, that is for those fortunate enough to have any family who stuck around & who care enough to want to help. That doesn’t mean that any family who is helping would rather us not be there at all. That doesn’t even necessarily mean that family would call us burdens or perceive us that way. However, when financial stresses are constant & not within ours or our family’s ability to meet, then yes, they are a burden, even if they’re one gladly embraced.

    Trying to focus on stating things in a more positive, less ableist way is not always positive. Discounting these facts just leaves some of us feeling even more alone & left out, even more marginalized by those who should understand. Of course, we should all still try to hang onto who we are as people, regardless of our illnesses & disabilities, but even substituting the words, “separate from” for “regardless of” does not always work, as some of us are so sick our illnesses do encompass every single aspect of our lives & they prevent us from being the people who were were before we got sick.

    Yes, we may still have those core personality traits, and yes, we may still have the same beliefs & interests, etc, but our illnesses can change/distort many personality traits & even beliefs, & can prevent us from following any of our interests. And, again, ignoring the fact that this is reality for many of us is hurtful and marginalizing.

    I do not write this to be negative or hurtful. I do understand the intent behind the original article. However, facing the reality that many of us live in is not being negative. It is being real. Only when one truly understand what others are dealing with can anything change.

  2. piip says:

    I am going to RESPECTIVELY disagree a little. I don’t take being a burden as a slur to me. My husband has to work a full time job, all of the shopping, chores around the house and take me to all of my many doc appointments. We are getting older now and this is very much a burden to him. Now he is great and gladly takes care of me but he is tired and in pain from arthritis and can’t do this much longer. He’s been doing it for 30 years and has never let me down. But it is totally a very great burden to him and saying it isn’t seems to belittle what he is going through. I agree that we are not our illness and so we must remember that it’s the illness, not us that gives that burden to our loved ones. Just my humble opinion.

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