Are You Abled or Disabled?
How Do You Know?

Chaya Grossberg
28
148

Has American culture cornered artists and healers into identifying as “disabled”?  Is a diagnosis and the benefits that come with it one of the best strategies for being funded?  Is a disability manifestation of a need for money and time as an artist or healer?

I find myself asking these questions because, let’s face it, only the most business-savvy artists and healers can get by on their work and gifts alone. That’s why many of them choose, consciously or unconsciously, to accept a disability diagnosis. Being sick seems the only socially acceptable excuse, especially as a young person who is not yet established, for living one’s life as an artist or healer. While some can play the game, compromise, and fit their art/gifts into corporate America, many cannot and I’d venture to guess that’s why we’re losing some of the most valuable members of society to illness. Now that “mental illness” is diagnosed so readily and often arbitrarily based on who has the prescription pad (if I had one I’d diagnose almost all psychiatrists), being abled or disabled is clearly a matter of perspective. This is a controversial way of framing disability, I am aware, but please bear with me as I continue to explain why ability and disability are culturally defined and far from easily determined.

Let’s start with the question of value, which I believe is an important place to start when discussing mental health (or anything for that matter). Do we want a world that values what is essential to us? Or will we continue to play along with the idea that warfare and patriarchal politics, medicine and education are working for us? You may say “I’m not playing along with those notions,” but if you believe in mental illness, you actually are, without even realizing it.

If there were funding for arts would “ability” suddenly spike and disability fall? The only problem would be a simultaneous fall in drug company profits, so let’s not talk about that.

When I hear people talk about disability rights and access, I have mixed feelings. On one hand, I’m deeply relieved that being differently-abled can be spoken of. I certainly don’t function highly as a cog in the American machine and if I were told I had to I would become quickly disabled. Yet with the paradigm shift of diverse-ability, I believe no one is disabled, at least not as a primary identity. Dis-abled means lacking in abilities and we all have abilities (as well as things we cannot do, of course). Moreover, we all have exactly the abilities we need to fulfill our unique life purpose.

People who are considered the highest functioning in American culture such as politicians, lawyers, medical doctors (including psychiatrists), major league sport players, etc., all lack certain abilities that I possess (and, of course, vice-versa). Are their abilities actually the real ones and mine “soft,” surreal, abstract, inaccessible and useless? With due humility, I must say no. I must defend that my abilities and yours, and all of ours, are either of equal, greater or immeasurable merit and value.

Is imagination a soft skill and major league baseball a hard human need? Is love useless and war necessary? Is beauty an indulgence and and punishment a requirement for the survival of our species? Is mental expansion woo woo and corrupt data funded by pharmaceutical companies the science that is saving our lives? Is peace extravagant but complex, abstract computer simulations sophisticated and worthy of funding?

It all comes down to worth and who is determining worth and who has been determining it for as long as we can remember. In order to redefine health, we must redefine worth. Are you sure the “abled” are able to accomplish what you value? Are you sure the “disabled” aren’t more able to heal the world?

Since there is quite a bit more funding in America for those diagnosed disabled than for those who call themselves artists and healers, we need to look at our value system. Of course it is important to put value on supporting those who are sick, injured or otherwise suffering. Many of us seem to agree on that as a basic premise, but have we ever asked ourselves why this is a value we share? The easy answer is, out of sympathy, empathy and compassion for our brothers and sisters. But is that the only answer?

I’d like to propose a balancing addition to that answer, which is healthy self-interest and concern for the evolution of our species. To become disabled is to-at least temporarily-take a break from business as usual. Some religions and traditions consider illness or disability a blessing and an opportunity for healing. True healing is not only healing of ones own body and mind, but healing of the interconnected web of humanity, healing of how we relate with one another.

So I venture to guess that the underlying motive in supporting those with disabilities that render them “less useful” in current culture is to pave the way for progress. And if it isn’t it should be. Charity alone, without believing in the potential of those receiving the charity, is useless. We must be giving “handouts” because we believe in the abilities of those receiving them. We believe they do or will have something to offer and it is worth helping them stay alive. If this fundamental belief isn’t recognized, charity can become an ego boosting mechanism of the “abled,” who are projecting their own insecurities about their ever so important corporate and business savvy abilities onto those with abilities they don’t understand.

Ironically these overlooked abilities are necessary if we are to survive (and thrive) as humanity.

When I was 21 I took a year off from my expensive liberal arts college to enter the mental health system against my will. Being on psych drugs (up to 7 at a a time) disabled me by almost all possible conventional standards. I was a classic case of dysfunctionality, unable to walk, read, communicate or think clearly. (Ironically some of my best poetry and songs came to me at that time). It was at this time that my mom applied for Social Security disability income for me, incumbent upon the fact that I was without a doubt “clinically” disabled. I started to receive payments of around $700 per month, plus free health insurance, which covered therapy (until I quit) and doctors’ visits, and enabled me to live without receiving money from my parents after awhile.

I slowly withdrew from the drug cocktail and, at about the same pace, regained a lot of abilities. In a few years I was writing and self-publishing books, teaching yoga, fund raising, dancing, hiking, traveling around the country presenting at conferences, doing childcare, singing, acting in plays, entering into relatively healthy romantic relationships and friendships, and making side money about equal to the amount I was receiving from Social Security. At what point was I no longer “disabled?” Since the only disability that seemed real to me was that caused by the “medicine” doctors gave me, I had a conundrum. It was important to me not to identify as disabled, yet I was still the person I always have been: able to do some things very well, other things so-so and other things not at all. The SSI checks I received each month brought up feelings of embarrassment and secrecy, while at the same time substantially supported me to live my dreams, develop talents and hobbies, spend less hours working for money and still save a considerable amount, living a simple life.

I believe all artists, healers and teachers deserve these things. In fact I believe all people deserve this luxury. “Do what you love and the money will follow” became so true for me -yet I saw my amazing artist and healer friends who didn’t receive $700 extra per month struggling financially in ways I didn’t have to worry about. I was concerned about receiving this money, concerned it would limit me, but the main thing about it that limited me was asking myself if I deserved it.

Returning to the abled/disabled discussion, there were and are many many things I was and am unable to do. I have less strength and stamina for physical labor than most people I know. Yet I taught 5 yoga classes a week for awhile, some pretty vigorous. Being in nearly any kind of 9-5 office environment is not possible for me. I have extreme allergies that keep me from being in a variety of locations. If I’m not doing something I love, I get more tired more quickly than many others. I don’t have the ability to work with other people all day. I can’t work in a noisy environment much. Keeping to a schedule that isn’t entirely self-designed is almost impossible for me. I can’t work in environments that contain cigarette smoke. I have many dis-abilities.

I also write more than almost anyone I know and write things that move many people regularly. I am highly intuitive and tell people things about themselves and the world that are just the very things they need to hear to move forward with confidence in their purpose. I have a healing presence and many people feel calmed, eased, and inspired when they come to my classes, listen to be speak, or read my writing. I have many more great abilities, but rather than continue to toot my own horn, I’ll say I’m incredibly grateful to have had “disability” income. It enabled me to nurture and expand these abilities when I was young, impressionable, and didn’t have the confidence to share these offerings in ways that would have brought me abundant money for them directly.

About 4 years ago I decided to go off of SSI. I had a meeting at the Social Security office in San Francisco where I had just moved. The worker asked me if I’m still disabled and I said, “I don’t know.” I knew of my abilities and disabilities as mentioned above. I knew I have the kind of ability/disability scorecard that doesn’t always make it easy to live in this world financially. Yet, I wanted to be honest, and part of me was tired of living with this secret money. I decided to have faith in being honest.

That decision not only lost me my monthly check, but resulted in Social Security claiming I owed them $12,000 for saving more than $2,000 in my bank account. I’d had more than $2,000 in my bank account for nearly 10 years, but they had never noticed. My credit score went from almost 800 to under 600 over the next couple of years as I couldn’t afford to pay back the $12,000, or really anything between my San Francisco rents and my full time job relocating to Arizona (while I stayed in California).

I was not especially more abled or disabled. I did feel good about having come clean and it has been a struggle to not have that support. I haven’t had health insurance or travel money in several years, but life has given me incredible donation based alternative health resources and some good travel opportunities that were funded. I have had nights of tension, tears and fear about money. It has been harder to relate with the wealthy people in my family who don’t know what it’s like.

In the end, I feel some satisfaction in putting myself out into the world more, offering my gifts and having faith that the money will follow. I would like to see a world that supports diverse-ability. I would like funding to go to artists, healers and other peacemakers so we can all identify as able and have the abundant resources we all deserve!

In the meantime, I accept and respect all people who receive SSI, as it is one of the few areas of funding provided by the government that generally does more good than harm, I believe, giving those of us with unique abilities resources to stay alive.  I still hope for a way to offer this money and more to people, without requiring them to identify with what they can’t do.

28 COMMENTS

  1. Two comments. It used to be that people could get ordinary welfare without having to claim a disability, and this was enough to live on. But welfare payments did not go up with inflation, and they also made it harder to get. I don’t know what is actually possible now for welfare, but SSI has always been a little bit more.

    And, I’m wondering about the relation between the non-discrimination/social model of disability, and the disability benefits/pensions thing. I guess that there should be a unitary system to support people who can’t work for whatever reason or who need to take time off or can’t work in the usual systems or usual ways. Hard in a society that is suspicious of people when we aren’t fitting like cogs into the system. That is the real thing that has to be changed underneath it all.

    Thanks for a good thought-provoking article.

  2. That’s a really good and challenging piece Chaya and Tina I support what you’re saying because these issues are now far wider than whether is person is sick/disabled by any definition. In the UK the UN rapporteur and Amnesty have rightly condemned our housing, taxation and welfare policies which are clearly resulting in starvation, eviction, homelessness, and unnecessary debts across the population both in employment and out of employment. People with mental illness diagnoses are some of the hardest hit of all. As you say political systems mean that cogs which don’t fit into the system and can’t work in the usual ways are a substantial issue which isn’t being addressed, politically, socially and not by psychiatric survivors movements neither. This is driving people to suicide and back into psychiatric services.

  3. Chaya,

    I think that many people simply are not in a place, emotionally and often physically (largely due to adverse reactions to psychiatric drugs and prior “treatments”) to work – full-time, competitively in the workforce.

    IMO, we need more safe harbors – places where folks can find shelter, good food and support – not necessarily with “professionals” (another source of injury for many). Given these basic things, I think we would see people find ways to work part-time, volunteer, develop more confidence, while healing.

    Not everyone on MIA appreciates the orthomolecular approach (nutrition) for healing. But I think most would agree that healing can take time. Dr. Abram Hoffer said it was not unusual that many of the folks he worked with, who had been in the conventional psychiatric system, with its drugs, incarceration, and ECT took ten years to fully heal.

    So, I would say we need to be cognizant of this, and offer places where those who have been injured can slowly heal, deeply heal… while feeling part of a community – encouraged and appreciated for who they are.

    Best,

    Duane

  4. Problem is we don’t have systems which easily facilitate volunteering or working part-time. For some people that will be their best outcome whatever support they have however much recovery they’ve achieved and it’s not viewed as acceptable by our welfare system. You can’t volunteer without its support and part-time work usually means having to claim tax credits in order to live and these are becoming subject to further conditions and sanctions. The vast majority of people in receipt of housing benefit are in work. They simply can’t earn enough or find cheaper rents because we have a housing crisis, we have thousands being evicted from their homes right now.

    We need completely different systems which support people to contribute whatever they can be that voluntary work, part or full-time or variable between all of that. What we have is crushing potential because you cannot easily move from one position to another. Psych survivors have the highest levels of unemployment here, some jobs have hundreds applying for a handful of posts, employers don’t pick people with long gaps in their CV. We have several million people on zero hour contracts, the worst possible combination of NO sick/holiday pay, no rights, constant uncertainty, and debt because of having to claim benefits on the weeks there’s not enough work but that takes weeks to come through so people get into debt in the intervening time. The working poor are the most common attenders of food banks.

    http://themaskedamhp.blogspot.co.uk/2013/08/trying-to-work-but-living-below.html

      • As far as I’m concerned, “profitable, gainful employment” is not a reality for all of US here in the U.S.

        I think minimum wage should be reserved for teenagers getting their first jobs and a minimum LIVING wage should be established for adults.

        A study was done in my area to find out the minimum required income to afford to live in this area. The results were about twenty dollars per hour. Without education and training, there is no job for somebody like me to earn that much. In all my years of employment, I never earned more than ten dollars per hour. I’ve always been dependent on food stamps, health insurance and housing. I’m one of those people that society HATES because I get the full package (disability cash payment, housing, health insurance). Technically, I don’t get food stamps anymore because I don’t want them. And I don’t want them because I think the state’s policy is criminal. I refuse to sign their application, saying that I “agree” that if I receive an inheritance (or win a lawsuit or lottery) the state will take it. I DON’T agree. Food stamps is NOT a loan. I think the state has no right to take an inheritance or settlement or lottery winning – they’d only have the right to disqualify me from receiving further benefits.

        I sometimes wish I was a policy maker. I think I’d be pretty good at it.

  5. I appreciate your way of teasing out that issues of mental illness are really issues of how society handles “misfits” in general. The creatively maladjusted are one such cohort. Perhaps we all have the capacity to fit in the category. There are so many who simply cannot contribute to the traditional work force because they are very young, very old, developmentally unusual, or disabled/disempowered by poverty, racism, and other forms of oppression.

    In order to speak holistically to questions of how to deal with “mental illness,” it helps to include all the ways that our society marginalizes and fails to support anyone who is different than the “abled” norm. Well done, and cheers to using SSI to effectively and beautifully pursue your path as a healer, artist, and educator!

  6. mjk I completely agree with you and so do many groups representing low paid, single parents,unemployed, sick, disabled people. This is an issue for all of us, but there are also specific issues to psych survivors who are one of the most marginalised groups for whom extreme policies are hitting hard. This is why I’d like to see all survivor groups joining forces with other action groups to lead on these issues with the specifics for psych survivors because it would go hand in hand with more generally aiding our overall aims to help our peers to get away from psychiatry. This level of disempowerment makes people more vulnerable to psychiatry.

    http://johnnyvoid.wordpress.com/2013/09/21/do-not-support-newly-disabled-tostay-in-their-homes-says-dwp/

    Some people have posted parts of their disability reports online where it’s claimed that people are ‘likely to recover’ from cerebral palsy, harassed by the Jobcentre whilst IN hospital, sanctioned for attending an interview, the examples are getting increasingly ludicrous. You couldn’t make this stuff up.
    The saddest thing I read recently was from persons with visual impairment, one being afraid to use her white stick and another (a US citizen) finding the Jobcentre simply not taking her ophthalmic problems into consideration even on supplying medical evidence of it. One person set fire to themselves outside a Jobcentre, another slashed their wrists in the dept, and another case involved a gun (we don’t have easy access to guns here so that’s very alarming to us). Jobcentres have been issued with ‘guidance’ on self-harm and suicide, what an indictment that a govnt dept has to issue guidelines because their policies cause suicide. Our government refuses to do an impact assessment and some people who have been assisted to live independently might have to go and live in a group home.

    I know the hatred you refer to mjk, I see it here, I know people who have stopped going out because they are so afraid of anyone knowing they are one of “them”.

    The greatest freedom is to be who we are living as best we can contributing whatever we can, all I can see are people’s skills and talents being pissed up the wall. The profession which gains from is, is of course psychiatry and all the private companies who make money out of others poverty or inability to acquire or do better paid work.

    It’s in part about how we include the marginalised (which is not an easy issue) but it’s also about our economic systems – living wages would mean no need for housing/health/living subsidies. That in itself would change the western world dramatically.

  7. “There’s a program in Brooklyn that gives artists dental care in exchange for pieces of art for the hospital or office”.

    I’d like to see everyone have a universal right of access to all preventative, critical and maintenance healthcare. How that is funded is another issue I know.

    “I’d like to see us challenge everyone to find things they are able to do, rather than unable to do, when applying for government money”

    Me too, and I’d like to call to arms all survivor organisations to get behind fighting for the support (living, housing and working) which are being eroded and to put all these great minds together in coming up with proposals for a different way of doing things so that being who we are, living as best we can, and contributing what we can, could become a reality instead of a war of divide and rule. If we don’t come up with some suggestions it will be decided for us.

  8. Chaya- Thanks for this thoughtful piece provoking thoughts into this very crucial topic. I’m a perfect example of someone like this that has been labeled disabled and got onto disability. For years I struggled to make ends meet dealing with PTSD and sever depression and anxiety. I was diagnosed with chronic Lyme disease 3 years ago and I’ve been dealing with that ever since. For the longest time I refused to go on disability. My counselor recommended it seeing the conditions I was struggling with she thought that I needed a rest from having to face the daily stresses of trying to pay rent. I never had a stable home because I couldn’t deal with people very well and I had super sensitivities to certain things and situations. I felt like I was fighting for my very life. When I was younger I was much more resilient to the stress but when I hit my forties I couldn’t cope as well and I got physically ill. I never did take drugs but for a few short times. I took anti-depressants for almost 3 months but I felt worse than ever. For some reason I never believed that drugs could help me, so even though I tried anti-depressants a few times I never saw any change. I just felt toxic and found that my moods were still as disturbed as ever.
    It does take time to heal but for me one of the factors has been exactly as you describe in your article. Perception. While disability is barely enough to survive on it covered my rent and I’ve never been in one place as long as I’ve been here. It has offered me a stabilizing factor I could not give myself any more….I too feel some shame and embarrassment being of white male privilege, but what I came to realize is people like me do not choose to be in this position. Sure there are those who face life’s challenges by using drugs or alcohol or psych meds and getting on disability benefits and this is truly taking advantage of the system to sustain a deep pattern or habit of destructive behavior for oneself. Then there are those who would attempt to recover and get trained or go to school drug and med free. Both are, in my opinion, very similar at their core, but one might be more aware of the possibilities and options they have for healing and recovery. I believe there are fewer of us who choose to suffer than of those who would step toward healing. Some folks may have chosen to never move beyond what they know but I believe most would given the chance.

    What is this chance? This is where the construct of our social service structure and our communities play a role. What we lack in these areas is apparent to me but also what help is offered is apparent at some level, so I believe I can get the support I need in the end. Not everyone sees it or experiences it this way and the demographic we are focusing on with these questions has a large impact. Again I become aware of my privileged status, but so many people come from much more challenged upbringings than I do and are faced with adversities I can only imagine. With that being said then I question the core of the issue. I think your article touches into that Chaya. At the core of this issue is how we perceive ourselves and how we have been trained to see our world and our situation. Artists and healers live in every one of us and while some of us are more tuned into that aspect of ourselves I believe no one is more special than anyone else. We are all capable of these sensitivities if we allow ourselves to wake up to them. These traits are quite human and they do make it challenging to show up at a desk forty hours per week for a paycheck, or labor in the trades as I’ve done. I’ve had tremendous difficulty in the work world and I associate that with the core of this issue again, being that our families and communities are severed lifelines. Sure some of us have community, but mostly those people are set up to fit into “acceptable” social parameters of enjoying communities and they are often not focused on healing for an individual. Indigenous cultures have had ritual and ceremony addressing illnesses in their communities, seeing them as part of the whole and as a necessary piece for the community and it’s ability to thrive. Modern culture shuns people who are not in the position to fit into these frail structures and attempts at community structure. Don’t get me wrong, I commend all attempts at bettering people’s lives and situations but it’s such a vast ocean, how do we begin?
    I agree with the notion that we are not ill when we struggle in these ways but we are severed from our connection to ourselves, other human beings, and our communities, and therefore we may also suffer from deep imbalances that come with the results of said severance. Eventually we become ill. Some become ill very young and will need much more to step up and out into health again. But again is this an illness or just a series of mechanistic reactive protections that human beings are so very good at entrenching their psyches into? If so can love heal all wounds and where can we find such love? Is that even appropriate? It would seem that the kind of love and nurturing human beings need after traumatic living is the very kind that cannot be offered to them through modern medicine and its approaches. The sterility there can often be as traumatizing as ones sordid past. There is an barely perceptible air of a client being less than healthy, or functional, that one must succumb to if one would like to get help or services, but it is there. We are asked to embody a state of victimization or “woundedness” when we are in the mainstream health cycle, and this may not always be the case but in my experience the more wounded and crazy I seemed the more help I was offered. If I was self empowered, and centered in my being then I’d be sent on my way with a prescription for paxil and a diagnosis of mild depression. So its much easier to get into the role of mentally ill than to face what I’ve spent my whole life trying to face with minor success wouldn’t you say?
    I do not see one single need for psychiatric drugs if we begin to look at the root and core of theses issues and how they evolved and came to be in the first place. More importantly I think beginning to see the issues at the core and find new ways to focus the mental health system on supporting those who need a helping hand. There are no simple solutions and I have no answers here, but I do believe that family and community are at the foundation of the problem and the kind of help that is available is frozen by bureaucracy and red tape. We need to be pretty “mentally ill” if we are even accepted onto the disability status and having that title does not help to shift our health and self image to one of power. Those who suffer physical, emotional, spiritual imbalances can become stronger for them and they are certainly not weak. Those who have recovered show us the potentials in their actions.
    Thanks again for this great post and apologies for a long winded response but this resonates very potently for me and some of what I’ve had to face in finding my way. Thanks everyone and may we all find balance and peace in the present and may our actions benefit all living things.

  9. My definition of disability is “when you can’t turn away from able-ism”; so yes, I consider myself disabled. And I do not consider that a reason for pity or a tragedy, but rather, a signal that I need more supports in order to survive (and thrive) in a society that is not set up for people like me.