The Disability Intersectionality Summit: A Gathering for Justice

Sandy Ho sits in her power chair and speaks into a microphone, next to another speaker on a stage in front of an audience.

On a damp and chilly Saturday in mid-October, I rolled out of bed several hours earlier than I usually would have in order to attend the biannual Disability Intersectionality Summit in nearby Cambridge, Mass on the MIT campus.

Groggy but enthusiastic, I stumbled down the stairs of my affordable housing complex and eagerly awaited The Ride–a discounted taxi service for disabled folks in the Boston metro area. After the pickup time came and went (as well as many minutes more), I called the dispatcher to check in. They could not locate the taxi. I waited another twenty minutes in the downpour and called again. They were condescending to me, conveying that this was just how it was, not caring that I was on assignment and they were jeopardizing my ability to do my job. The taxi finally showed up forty minutes after the proposed pick up time, and the driver shrugged his shoulders when I mentioned his lateness. I tried to impress upon The Ride the irony of a taxi service for disabled folks being forty minutes late to bring me to a conference on disability justice that I was covering for a media site focused on disability rights, but it was lost on them. However, to me it made the mission of the conference I was about to attend all the more clear and crucial.

While I missed the opening plenary and the first breakout session, I was at least early enough to attend all the subsequent ones. As inherent in the title of the summit, its theme was how other marginalizations often intersect with disability–whether that be sex, class, sexual orientation, gender identity, immigrant status, and race. As such, the first session I attended was concentrated on how immigration is in fact a disability rights issue, with the main focal point being the current administration’s recent “zero tolerance” immigration policies at the border that separate children from their parents or guardians, confining those children while detaining or deporting the adults.

In particular, the presenter talked about a new proposal to the “public charge” provision as related to the Immigration Act of 1882. According to the provision, someone who is a public charge is “primarily dependent” on government assistance for more than half their income. However, under the Trump administration this rule would be expanded to also encompass other means-tested government benefits in addition to cash welfare and Social Security Income such as Medicaid, food stamps (SNAP), and housing assistance. Also, it would lower the income percentage threshold to include anyone who accepts these benefits if they equate to financial assistance that meets or exceeds even 15% of federal poverty guidelines (which is tantamount to only $1,800 a year, or $150 per month). Since disabled folks are more likely to use such federal assistance programs than the general population, these proposed changes would directly discriminate against disabled immigrants. The public comment period on this proposed rule change is now open and closes on December 10th. The presenter also mentioned how the immigrant children currently being held in confinement will inevitably experience significant trauma, which experts have noted is directly linked to the development of both psychological disorders and even physical medical conditions. This means our country’s leadership is proactively creating a disabled population it also intends not to service (or at least service well).

After lunch, I then attended the book reading for Leah Lakshmi Piepzna-Samarasinha’s Care Work: Dreaming Disability Justice. Piepzna-Samarasinha offered a rousing reading and speech, drawing from explicit excerpts of her book that offered a radical vision for reform in our society that would fully recognize and include disabled individuals of all backgrounds and identities. Specifically, the book espouses a path that especially lifts up queer disabled folks of color. Part of the reading relayed that this could be achieved only when our society is finally ready to fully accommodate people in the disability community–without all the rigid rules and expectations that by default are exclusionary to all who are not straight, cis, white, and able-bodied.   

Shortly after the reading ended, representatives of the anti-incarceration group Black and Pink took the stage to strongly declare that there can be no disability justice behind bars. As someone who is the child and niece of individuals who spent much of their adult lives incarcerated, I had a vested interest in attending this specific session. Douglas Rogers, a former inmate with the Massachusetts Department of Corrections, was first to speak. He relayed his own experiences on the inside of the prison system, referencing the sexual and physical abuse he suffered by prison guards where he was being held. He also described the lack of accommodations and limited care for disabled inmates, including those with mobility restrictions who often did not have access to wheelchairs. Incarceration disproportionately impacts low income folks and people of color,  even as these demographics also tend to have chronic health conditions at higher rates than average. Douglass and co-presenter Shaya French noted that our criminal justice system in the United States is excessively punitive, with only 5 percent of all cases even making it to a jury trial and many serving sentences for non-violent drug-related offenses.

Similar to the issue of detaining immigrant children, conditions in our prison can contribute to severe trauma, effectively creating or exacerbating illnesses that can be debilitating–as can be the abuse suffered by inmates at the hands of those guarding them. As with the situation along the border, inmates are not receiving adequate healthcare services and resources while in their confinement.

While I was interested in and intrigued by all of the sessions I attended, it was these three that struck a particularly strong chord in me and underscored the need for comprehending but fully integrating intersectionality when it comes to disability rights. As noted by the DIS founder and ADAPT member Anita Cameron during the closing keynote, the issue of disability rights has historically been whitewashed and tends to overlook those of other marginalized identities. It’s time to bring everyone into its folds. The conversations sparked at this summit were an impressive initiator of this effort that will hopefully culminate in more progressive and inclusive approaches to disability justice.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Affordable Housing for Disabled People Should Be a Right, Not a Luxury

Coins are scattered on a table. Three piles of coins, each bigger than the next, lead up to a stack of coins with a small wooden model of a house on top.

At the end of last month, I woke up to the swooshing sound of an envelope being stealthily slipped under my door. When I got out of bed to inspect it, the greeting did not even include my name, but was instead addressed to “Resident of unit X.” It informed me of an impending monthly rent increase of $50 beginning in April. In some ways, this was a surprise–since I had been in the building manager’s office not even two weeks before and she did not alert me to any such increase. I had been completing the paperwork to recertify my right to continue living in the building–which included a thorough review all of my 1099 tax forms for 2017 and six months of bank statements. This is a mandatory process for the privilege of living in affordable housing and paying a few hundred dollars below market rent–by ensuring I am low income enough to live here, but somehow also not too poor that I can’t easily absorb the hit of a $600 annual rent increase. It’s a fine line that is set to become the tripwire that could send me tumbling down into abject poverty.

I live in the Boston metro area–which is the third most expensive rental market in the nation–in a neighborhood that has recently been upscaled to include a brand new luxury condo right next to our complex and a massive revitalization project, causing an increasing market rate that trickles down to impact the most vulnerable of us. What is happening in Boston with its housing squeeze is not unique, but rather part of a larger national trend to stigmatize and displace the disabled people who comprise a large percentage of affordable housing tenancies.

Earlier this month, the U.S. Department of Housing and Urban Development (HUD)–an agency charged with ensuring equal access to housing for historically marginalized people–indicated it would be removing the phrases “free from discrimination” and “inclusive communities” from its mission statement. In particular, the mission statement would instead read: “HUD’s mission is to ensure Americans have access to fair, affordable housing and opportunities to achieve self-sufficiency, thereby strengthening our communities and nation.”

According to a March 5 memo sent to political staff obtained by HuffPost, the proposed changes signal “an effort to align HUD’s mission with the Secretary’s priorities and that of the Administration.” However, this transition in priorities to include special emphasis on self-sufficiency over inclusivity and anti-discrimination practices has dire implications for the disabled. Affordable and adequate housing is a crucial component of disability rights, but is still woefully lacking in the U.S. In fact, prior to the passage of the Affordable Care Act and the mass expansion of Medicaid in over 31 states, 4 out of every 5 Medicaid dollars went toward squirreling away the ill and elderly in nursing homes as opposed to allowing them to be in their own homes living on their own terms. Medicaid expansion under the ACA in turn enabled the expansion of Personal Care Attendant (PCA) services under the program in many states–which allowed severely disabled individuals to access needed care in their own residences as opposed to being institutionalized.

HUD’s emphasis on self-sufficiency also ignores the reality that many people who are disabled cannot work full time or at all due to the nature of their disabilities, combined with the inherent discriminatory forces of the labor market. As reported by the Chicago-based disability advocacy nonprofit Access Living in 2008, over 70 percent of people with disabilities do not work and instead receive benefits due to “work disincentives, employment discrimination, and the lack of educational opportunities.” Instead, people who cannot work because of disability usually receive financial benefits through the Social Security Administration–either Social Security Income, or SSI, or Social Security Disability Income, or SSDI.

Access Living cites a Technical Assistance Collaborative (TAC) study that showed there was not one single housing market in U.S. in which a person on SSI could afford even a modest efficiency unit without a housing subsidy. This situation is even worse now as rental prices have soared in the decade since that report was released, while SSI payments have remained largely stagnant.  A 2012 joint study conducted by TAC and the CCD (Consortium for Citizens with Disabilities) even found as many as two million non-elderly people with disabilities in the U.S. “reside in homeless shelters, public institutions, nursing homes, unsafe and overcrowded board and care homes, at home with aging parents or segregated group quarters-often due to lack of affordable housing in the community.” The report also revealed the average monthly rent in the U.S. for a one-bedroom apartment was found to 104 percent of the average monthly SSI payment received by the 4.8 million individuals with disabilities living in non-institutional settings. This phenomenon has contributed to the commodification of disabled folks by management properties and housing corporations of all types–including those explicitly designed to cater to low income demographics.

Personally, I do not qualify for SSDI because my prior employment for a municipal government exempted me from Social Security payments. And SSI would only cover a little over half of my monthly rent in my affordable housing unit, so I literally cannot afford to be on it. Additionally, since moving to my current residence four years ago in the Boston area suburb of Arlington, my unit and the complex have been besieged by code violations ranging from the minor to the egregious. This has included me suffering a major wasp infestation in my bedroom for an entire season that prevented me from sleeping in it and a burst bathroom pipe that flooded that entire room and left me without a sink for over a week. More recently, our backdoor exits were taped off in excess of five months, reportedly due to falling bricks and shingles from the rooftops–not only potentially serving as a safety threat and fire code violation, but hindering those of us with limited mobility from using the exits that offered easier access to the parking lot and trash receptacles. Reporting concerns or complaining about these issues to the nonprofit that owns the complex or its contracted management companies has at times resulted in hostile or dismissive comments–that is, if they’re acknowledged at all. One common response I’ve received is that I can always move if I don’t like the conditions, knowing full well that I can’t afford to do any such thing.

When my health took a major turn for the worse within the first year of my move, my income was more than halved. Right now, I pay virtually all of my monthly my income toward rent, so a $50 increase is devastating–but even more exasperating for a place that has so often not been up to code. The solution offered to me when I explained why my disability deterred me from easily or significantly increasing my income, was to pressure me move into a studio apartment in another building–even as I live on the top floor with no elevator and do not have the physical and financial means to move (nor would such a unit grant me the ability to keep my home office with its extensive accommodations that allow me to continue my freelance writing work). Meanwhile, this same month my rent increase takes effect, the nonprofit that owns my complex will be holding its annual fundraising event–its spring walk for affordable housing.

Unless and until housing is treated as a human right rather than a privilege disabled folks should be grateful for–regardless of the safety and quality of the housing–the result will be our continued commodification and exploitation. Combating this should not just entail building more affordable housing units or expanding mobile voucher programs–but addressing the root issues of affordability in the greater community, the disparity between rental prices and disability payments, and the serious lack of sustainable income opportunities for those who need flexible accommodations.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.