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).
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.