In response to a recent blogroll on Disablism – I chose to share a talk I gave last week about poverty and disability for Georgia State University’s chapter of Amnesty Intentional; specifically to address their new “Demand Dignity Campaign.” I chose this topic because it is a perfect example of an aspect of the institution of oppression associated with disability – ableism/disablism/disablement (these labels vary by context, country, and linguistic leaning).
Disability Defined
I began with a definition of disability using the definition set-forth in Article 1 of the UN Convention on the Rights of Persons with Disabilities (CRPD). Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.
This definition is useful for three reasons. 1) It is relevant to describe exactly what disability entails when espousing a theory related to disability to people who claim no disability knowledge thereof – even though we are everywhere. 2) It is imperative when talking about any issue – particularly on a global level – that uniform definitions be utilized. Uniform definitions help with effective assessment and quantification of any variable appealing to funders and people who want to know the scope of a given issue. And it seems that a definition that was arbitrated and agreed upon by a global constituency seems to be a good place to start to find a uniform definition. 3) The definition gets at the sociocultural aspect of disability that is so often glossed over when talking about disability; with the normative understanding of disability entailing a personal tragedy that structural and environmental forces play no role in. The sociocultural component of disability (disablement) will be taken up at length in a moment.
The United States is one of the 144 signatories of the CRPD yet did not ratify it (only 85 nation-states did). When a nation-state ratifies a treaty it becomes binding law in their land. Therefore the ideas codified in the CRPD could be actually enforced in the US. Gasp! What do you mean people could have the right to free from torture (Article 15) and be included in the community (Article 19) – i.e. not be institutionalized? Well, not in the United States. Why, you may ask? Ah good ole American Exceptionalism – the idea that we already have good binding law in our land (the Americans with Disabilities Act – ADA) thus do not need any other doctrine to rule. The problem with our fabulous US law, the ADA, is that it is an unfunded mandate – to enforce it one has to sue and most disabled people are economically ghettoized making it difficult, if not impossible, to enforce the law.
Did the US not sign the CRPD because we do not want to be held to an international standard of human rights law?
Disability & Poverty Globally
Before getting into the specifics of the economics of disability in the United States, it’s important to note that disabled people comprise the world’s largest and poorest minority group. We are often the poorest of the poor and the most isolated of the isolated. Of the 650 million disabled people in the world, 2/3 of us live in poverty. Of those, 650 million disabled people, 100 million of them are impaired because of issues stemming from poverty – malnutrition and poor sanitation. This fact illuminates a dynamic with poverty – in which poverty creates disability AND disability enables poverty. This cycle of the poverty is illustrated below.
Disability in America
According to the US Census Bureau report on disability in 2005, 1 in 5 people are disabled equaling 54.4 million people. Of those who are working age, 30.7% of disabled people are employed compared to 75.2% of nondisabled people of the same age. The 2 million disabled people incarcerated in institutions nationally are not included in Census numbers.
The American Disability Poverty Trap
The question implicated from the above recitation of disability statistics is: what happens to all the working age disabled people who want to work but aren’t? This question acknowledges that there are some/many people who don’t want to work and think we should get over the idea that personhood hinges on working.
Those of us who can’t or don’t work often have to rely on the vicious machine of social support which come in the form of Social Security Income (SSI) and Social Security Disability Income (SSDI). The viciousness of this system comes to fruition in its creation and maintenance of poverty for disabled people.
About 9 million disabled people receive SSI or SSDI in the US, with 75% kept at or below the poverty line. The statement cannot be made universally that SSI and SSDI compels poverty because of the nature of the funding systems. SSDI is something one pays into and can procure after acquiring disability – so the amount one gets is contingent on how much one made during their nondisabled days (similar to unemployment). SSI is funded through state and federal dollars so in some states one could get (in theory) a livable amount of money. For example, in California one can make about $800 dollars on SSI, whereas in Georgia one can make about $600. Neither of those sums of cash seem livable. I dare you to try to live on that income and survive; actually I don’t.
Another big problem in this system is all the disincentives that are associated with getting off these forms of income (and OUT of poverty). To procure SSI or SSDI one must demonstrate they cannot work and are really disabled. The latter is almost humorous because so many of my federally defined “severely disabled” friends and I have been denied SSI because we “aren’t disabled enough” despite wheels, spazliciousness, etc. Proving we cannot work creates a deleterious psychological barrier for disabled people. Through shoring up our case that we need social support, we have to argue the point so strongly that we might internalize it as truth. This internalization reifies the culturally pervasive assumption that disabled people have no work-value. This assumption is aided by (and pushed on us through) the network of people who make a living by establishing and enforcing the boundaries to procure SSI and SSDI. It is reasonable to assume that those pushing the “lack of work-value” ethos actually believe it.
Perhaps the psychological barriers argument seems a bit soft-science driven your sensibilities, so here are some hard facts. If a disabled person wanted to make more money (to survive) than SSI or SSDI provides, they might seek additional sources of income. But SSI and SSDI benefits are reduced by $1 dollar for every $2 dollars of additional earnings procured; that’s a tax rate of 50% (higher than that of the wealthiest people in the US). Who wants high-taxation that keep people in a system “draining” taxes? Along with the extreme tax-rate of earned income, disabled people may lose their housing subsidies and food-stamps when seeking to earn money other than social benefits.
Even more alarming is that one will lose healthcare (Medicaid and Medicare) if a disabled person procures “too much” additional funds. This is one of the most diabolical active agents of the disability poverty trap because so many of us are dependent on healthcare. This is especially true for people who need long-term support care (or attendant care to help with activities of daily living, like bathing and dressing). Thus disabled people have the choice – do we take the leap and hope that a job we procure can provide good healthcare (and has no “pre-existing conditions” clause) or do we stay in the system to survive? Also, what happens during the gap between losing a dream job and the struggle to get back in the system to survive?
As a sexologist I cannot neglect to mention the disincentive to marriage that is associated with the procurement of SSI and SSDI. In sum, disabled people may lose their benefits if they marry because their partner’s income will be judged as their own assets. This can mean that marrying someone living at or just above the poverty line can trigger loss of benefits – and loss of survivability for disabled people and their partners. This puts some folks in a precarious situation because they want to marry – and not live “in sin” – but can’t (coalition-building example here with queers seeking marriage rights).
These facts address the fallacious and oppressive idea that disabled people (along with others trying to survive on social benefits) enjoy a great life “draining” the government.
Underpinnings of the American Disability Poverty Trap
Undergirding the disability poverty trap is our history of pathologization and devaluation (i.e. stigma) that is enacted in discrimination. Stated another way, disabled people historically have experienced structural violence through forcing us to live in cultural or environmental locations that harm or claim our lives. This hinges on the archaic belief that there is a biological root to our “degeneracy.” This is part of the philosophy of the rampant eugenics movement which occurred in the US until the early 1970s. Eugenic programs targeted not just disabled people, but people of color and those improvised as well (a good coalition-building example). Some disabled people still face sterilization but are not often outright called “degenerates” anymore. Current examples of sterilization are framed as benevolent treatments that help protect us from sexual violence and render us more manageable for our-givers. The passing of time has really brought progressive values.
Many people profit off of our devalued social position, as there is an industry of “care” built around disability. The most lucrative example is institutionalization – with 2 million inmates in nursing homes that are often run for profit (2/3 are) and where one crip body can earn $30,000-$82,000 annually. Ending institutionalization is a heated issue, in which many people are against. As an example, in many localities institutions/nursing homes provide a large portion of the jobs in the area. Understandably many people want to have jobs so they can survive and legislators protect this voiced economic interest of their (valued?) constituencies. What’s lost in the fight for workers’ rights is the rights of disabled people.
Does the disability poverty trap appear to be a cultural caste system – in which disabled people are assessed value based on particular (sometimes immutable) trait?
Ending the Disability Poverty Trap
To address the problem of poverty globally, it is important to examine the cultural context of disability. This means it is unreasonable to assume that disablement operates the same in every location and work that seeks to ameliorate disabled people cannot only employ a western understanding of disability. It requires those who want to work on this issue to listen to the people in the locations we seek to help.
In the United States, many people are working to change the social status of and the social services for disabled people. Crip shoutout to ADAPT: the rabble-rousing group of uppity crips who comprise the radical direct-action contingent of the disability rights movement. ADAPT works to end the Medicaid-bias toward institutionalization and promote accessible affordable housing for all. Check out the narrative of their recent in action in DC by sexy friend Philosopher Crip. Resolving the two issues ADAPT focuses on will help promote the human rights, inclusion and visibility of disabled people – thus working to eliminate the traditional sociocultural understanding of disability that undergirds the disability poverty trap.
That seems to be one of our biggest problems – dominant culture does not value disabled people. The graph below helps illustrate that at the root of the disability poverty trap (and the circular nature of poverty creating disability, as well as disability causing poverty) are sociocultural values that harm disabled people. Thus, if parties are really invested in ending the disability poverty trap, it is crucial to work to dismantle the negative assumptions associated with disability, as well the enactment of those assumptions. This is how work like that around sexuality and social inclusion are useful to address the political economy of disablement.
Please consider working with the disability rights movement, if you aren’t already. Support work done by groups like ADAPT. Critically engage your (and others) understanding of what constitutes valued personhood. Subvert the understanding of normal (at least in your own mind). As cheesy as it may sound, through changing minds, we can change the world.
I feel like ranting about this… since I was just screwed by the very system I’ve grown far too reliant on!
In your discussion of the “American Disability Poverty Trap”, you highlighted the low amount of SSI benefits. Do you think the problem may not rest entirely within that amount, but rather the failure of local public service delivery systems? Once someone is triumphant within the Social Security bureaucratic nightmare, there are other entitlements available through local and state government: You might think of food stamps, Medicaid, temporary cash assistance, and HCBS waivers. Assuming one is living in the community and not worried about providing for the next meal, the next logical priority is housing. Unfortunately, this is the greatest expense for most individuals.
Access to affordable housing can lead to many individuals’ expectations of living independently in the community. Subsidized housing provides the greatest opportunity for individuals surviving below the poverty line. However, in many localities the need far outweighs the supply. Waiting lists can be years long. There are some stipulations that allow individuals to move up to the top of the waiting list, but they are measurs of last resort. For example, special consideration is granted where someone is homeless or a victim of abuse. When these programs are relied upon for individuals to attain and maintain their goal of living independently in their community, something more must be done.
The disincentive to reduce one’s reliance on public assistance is further compounded by the locally administered assistance programs discussed above. I know you focused on this, but I wanted to expound on the additional potential losses. Not only can procuring additional sources of funding drastically impact SSI benefits, but it inevitably means the potential loss of funds to buy food, access to healthcare, and affordable housing. As you pointed out, the potential losses far outweigh any monetary gains from working.
In “Underpinnings of the American Disability Poverty Trap”, Identifying industries that profit off the oppression of disabled people is huge. It flies in the face of some of the basic conceptualizations of human rights. It is appalling that anyone would be expected to forfeit personal autonomy in order to receive the most basic requirements to subsist. Furthermore, I’ve recently expanded my understanding of other types of autonomy. I strongly believe disabled people as a whole have grounds for insisting on greater control of the programs and services most frequented by disabled people.
I enjoyed reading your discussion. I look forward to the next post.
Right ON!! Plus, don’t forget the thousands upon thousands of people who make a living off of our disempowerment: not just nursing home workers, but social workers, case managers, etc. ad nauseam. This is especially acute in the developmental disability community. Just last week, I was in a huge hotel ballroom seating about 400 for a legislative breakfast sponsored by our area regional center (state DD service delivery agency). Perhaps ten percent were actual people with DD. Another smattering were parents. But the overwhelming majority were normates whose job it is to help those poor helpless disabled people. (eye roll) Heaven help them if we ever were allowed to lead self-determined lives for ourselves: they’d actually have to go out and work for a living!
“Did the US not sign the CRPD because we do not want to be held to an international standard of human rights law?”
Not to undercut the rest of your scholarship, but is the Pope Catholic? I have a vivid imagination and it doesn’t include a scenario in which the US refuses to opt into international law (“opt into international law”… there’s another rant) simply because it’s morally best not to do so.
Thank so much for this article. It’s clear that you have lived the nightmare that the US government tells us is “help”. Why is this never mentioned on the mainstream articles?
If you have a way to find a VIABLE job or business – could you please let me know? I would be very greatful for any viable suggestions from anyone.
I don’t think of myself as “disabled”, but I’ve been fired for “disability”. Of course, this is illegal, but the EEOC, Protection and Advocacy, VR, SBA, etc. refuses to deal with this issue – and I wasn’t asking for a great deal of help, it would been nice if the employer was informed that they were violating the law. Now, I’ve been put in a place were I can’t get any government help, because I was doing a good job (not disabled – WOW). I’ve asked the thousands of “helpers” which refuse any help, because I’m not qualified for SSDI – including OneStep and VR. My retirement has been replaced by a tiny “benefit”. I’ll not only lose what I’m receiving and will have to pay back ALL of the “benefits” (my retirement) if I were to accept a small (minimum or less) job. The government insists that I have to disclose that I was fired for “disability”, so they will not employ me. I’ve applied for literally thousands of jobs only to be screamed at “WE DON’T HIRE THE DISABLED”! I’ve tried to buy businesses, only to be told that my credit is nonexistant. WIthout any “benefits” I’m barred from and food stamps, heat assistance, scholarships, etc, etc. so I’m tired, hungry and cold.
Again, any viable suggestions would be greatly appreciated.
Enter your comments here…Vey interesting comments i am a black person living in a prodominantly white country and at times, i feel like i am also disabled by the attitudes and discrimination of society. Hence i am studing in the area of disability because although, not disabled i deem it fit to fight for the rights of people within society who i can relate to. PWDs are the most marginalised and discriminated in society and as a black person i relate to them.
Your comments were quite informative and highlighted that althought we conciously think we are operating in a social model of disability there are no evidential benefits for PWDs not signifying the UN convention rights allows controll, oppression and discrimination to continue. How long is society going to let PWDs remain in the status-quo and if people like myself don’t help advocate and fight for their right, them who will?
Thanks, black irish, I’ve felt a bit of comradery with black people too, because of this stupid situation, though I don’t know any black persons currently. I think alot of us whites just abuse whoever is available, when the chips are down or maybe just when they sense an advantage? Maybe it’s just that we feel isolated? I know I’ve gotten more sensitive to people in wheelchairs, as I used them at Walmart a couple of times. (Thanks so much, Walmart, but I need an income to afford to spend in your store). I’m very blessed that my body is slowly getting better. The financial situation, though, is getting worse everyday that I’m ignored, not just for me only, but for the whole country – who are cheating themselves.
Thanks for the comment and advocacy thoughts. Any viable suggestions to lead to income would be greatly appreciated. Is there any collaboration that is happening?
Back to the article, the insurance says that we are up to 30% of the population in this country. And in this neck of the woods, it costs $90,000/yr for a nursing home (not including expenses such as the mandated drugs) – which the government will place a willing and capable person into, so they can have a way to take her home. How stupid is this society, anyway?
Where do I go? Who cares about the waste, greed, fraud and blatant violations of the law?
I appreciate your website to put my comments on.
Any help would be greatly appreciated. Any survival tips. Links to any legal help (real people, not the government “help”). Anybody with soul. ANYTHING AT ALL!
This is the very exact response that I get from the government and the government sponsored websites – NOTHING.
It would be great to get some discussion, “how I found a way to survive” stories, anything at all.
I am less willing than you to endorse groups like ADAPT. In fact, their opposition to a living wage for disability aides (and siding with Republicans against this argument for an increase to the minimum wage) means I would strongly question their ethics, their sense of solidarity, and their principles.
interesting read 😉