The Class Nightmare of Disability

Seeking instant invisibility? Displacement from society? Separation from the shared life expectations of friends, family and colleagues?
If so, become disabled.

Visible or invisible, commonly recognized or incomprehensible, causing odd tics or socially-unacceptable behaviors, your disability will likely make you actively ignored by others or looked at like a circus freak.

(“Mommy, why is that lady riding down the street in that chair?” “Because there’s something wrong with her, honey. Don’t stare.”)

“Something wrong” eventually becomes “not like us.” “Don’t stare” becomes “it you ignore it, it won’t exist.”

After becoming disabled in 1994 with a poorly-understood but severely disabling illness, I lost my career — and ability to work, home, marriage, many friends and the place in the American upper middle class that I had always known.

I now live in a shadow world where my illness is largely unseen, ignored, incomprehensible or just too hard to look at. Concessions to my limitations so that I can join in “normal people” activities are rare.

But in this shadow world I’ve found brilliant, talented, creative, loving and supremely courageous people who somehow keep going, despite pain and desperation. And we help each other keep going, often with very dark humor.

Some can still work, but it takes a hard toll. One friend has to plan every day down to the minute to prevent over-extending his fragile body. Another had to change careers radically after an accident, yet still has no idea how long she’ll be able to sustain herself. One with a mental illness is under silent but not-very-subtle scrutiny by superiors lest she go nuts. She describes herself as feeling “equal but very separate.”

Many of us can’t work at all. Most I know are people like me who grew up fairly comfortable, are well-educated, and had good careers. And then disability put us among the “untouchables.”

And because (Wake up, America!) there really is no financial safety net, days are spent grappling with limits imposed by disability, receiving little to no adequate medical care, and frantically seeking ways to pay for food or meds or way-overdue bills.

Some could work a little, but guess what? On Social Security disability, earning an extra $1000 per month will cause your disability income to be cut off. To get MassHealth insurance in Massachusetts, a single person cannot have monthly income over $905 (including disability) nor more than $2000 in assets. Similar limits exist for subsidized housing, food stamps, access to food pantries, any type of home assistance and other services. And even if one qualifies for help, the cold dark mazes of ever-contradictory bureaucracies make it nearly impossible to find it.

So the disabled are pushed out of the normal social class they know and understand, through no fault of their own, and left struggling terribly.

Life is eased by knowing each other. Even passing on the street, there’s a sense, a look, a vibe that makes us recognize to each other. We know the person we exchanged a glance with, perhaps a smile, understands. Gets it. And what they are going through has often given them a wealth of what is most needed to keep people alive and connected to each other and to society – compassion.

How can we develop more of that to break the isolation of the disabled and find ways to foster new senses of connection, safety and worth?

8 Responses

  1. Linda Weeks

    I want to say that the lady I always looked up to, the beautiful and intelligent woman with so much going on, who’s had a rough go of things, is very much still a beautiful and intelligent lady, who I am exceedingly proud of. She’s taken all the hardships that came her way and made a one-of-a-kind creation – herself, today, and very much a person to be valued, admired and loved. We need more appreciation between us all, and less discrimination. Thank you for this article, Jan. ..and Keep ’em coming!

  2. Trude Diamond

    Thanks for telling it like it is Jan … not that you ever told it any other way!
    As we all age and experience the invisibility resulting from ageism in this country, I hope that at least others in our age cadre “get it” and make their middle-aged children and youthful grandchildren aware that diminished ability of one kind does not diminish the contribution a person can make to the rest of humanity.

  3. Brent

    Form co-operatives. When like people mass together, the sheer force can accomplish many things. There ARE “Intentional Communities” catering to us disabled folk. Pool resources. Make a stink! Under the revised Medicaid rules, there is now a category called ‘working disabled’. California has such. You pay a SMALL monthly premium for State health coverage and also able to earn up to 250% of the FPL. (Federal Poverty Level) AND your SSI/SSDI income is NOT counted, and you can save up earned income and NOT be subject to the ‘resources limitations’. Plus the State will pay your Medi-Care premiums if you are so eligible.

    But yes, it’s hard. Especially right now. We are the ‘scapegoats’ for budget cuts which are times when we need it the most.

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  5. Melva Smith

    While I have an invisiable disability, (MCS) my life is not invisable. I have chosen to live my life as an exclamation rather than an explanation, encouraging all to pick up the pieces and become involved in MCS Awarness even if it’s just responding to this post. The silence must be broken, and it starts with us….the disabled.

    1. Lena Rothman
      Lena Rothman

      Wow,hey, I have MCS also! This is such an unknown, and denied illness it has taken a lot of my strength to stay sane (relatively). I spent 10 years in isolation, have gotten stronger, maybe overdid it and am once again isolating because my level of tolerance to fragrance chemicals is at a low again. How can one earn a living when I can’t be around people, in most houses, buildings, apartments? There is a daily onslaught from the chemical industry by way of “sanitizing” every fucking inch of space with fragranced(chemical) emitters. It’s nearly impossible to find a bathroom outside of my house that is safe for me to use.People act like this is just my problem and it won’t, can’t affect them. I’m sure I once believed that too.I meet and learn of more and more people with MCS. Having an invisible illness reminds me of the feelings i had as a kid of not being accepted, being different, and having to make my own way as limited as that can be.Being disabled in an ableist society is as painful as not being able to afford what you need to live let alone thrive.

  6. Nancy S

    Everything said in this article is true of being homeless. People who are homeless are “Invisible” and “Untouchables”, perhaps even especially if they were middle-class and don’t look or act like the stereotypes people have of people without homes.

    Ironically, disability is the way many working class and middle class people *become* homeless. Sometimes, the disabled homeless–especially the “invisibly disabled”–are invisible *within* the homeless world AND the social service world that you’d think would know better.

    Sometimes, even other disabled folks maintain the caste system, as in the sentence “So the disabled are pushed out of the normal social class they know and understand, through no fault of their own, and left struggling terribly.” There is the whiff of middle class assumption, that “normal” means “Not Poor” and that there are the Deserving Poor (who are poor “through no fault of their own” and are “pushed out” into a world they don’t understand) and those Other Poor (who brought it on themselves? who are already well-acquainted with poverty?).

    Ironically again, many poor people with “invisible disablilities”–who have ADHD, depression, PTSD “through no fault of their own”–are assumed by others, even those who are disabled themselves, to be ___________ (fill in the appropriate stereotype about people in poverty). The ADHD person acts impulsively or can’t stay focused on work, the depressive can’t drag themselves into work on time, etc. When they can’t work, is it laziness or deliberate, or is it mental and physical fatigue and stress reaction?

    For some, “normal” nearly always involved “struggling terribly”, and they didn’t have far to fall when they finally went onto SSI Disability. For others, “normal” was up and down: you manage to land a middle class job, then you can’t handle the middle class stress and expectations the job entails, and you crash and live without for a while until you can muster up the energy and focus to begin the climb upward again.

    When you fall all the way into the Bottom Class you *really* become Invisible and Untouchable. Imagine discovering that someone is in the same professional field you once were in and has a simlilar background; you discuss technical stuff, you ask about employers and receive tips on finding employment in that field, you’re really connecting. And then she suddenly remembers: she’s the church shelter volunteer, and you’re just another homeless person. Her face changes, her body turns away, she’s been caught in public talking to one of Them, as if…they’re Normal. You’re no longer a fellow ex-techie, you’re an Untouchable. And she backs away like whatever brought you to sleeping on a mat in a church basement might be catching. If you’d had that same conversation in a coffeeshop, and you’d had a cane, there would be no class assumptions or discomfort, your job loss would be a cause for sympathy, not fear. She might even give you her card.

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