by Vilissa K. Thompson, LMSW
Shining a spotlight on a newer, yet growing concentration in academia, disability studies in education, fits my initiative in focusing on disability-related topics this month in honor of the 23rd anniversary of the Americans with Disabilities Act (ADA).
Disability Studies in Education surfaced in the United States with the founding of the Society for Disability Studies (SDS) in 1982. According to the organization’s website, the Society for Disability Studies is “an international non-profit organization that promotes the study of disability in social, cultural, and political contexts.” It took almost 20 years after the SDS’ founding for a special interest group (SIG) of the American Educational Research Association (AERA) to develop Disability Studies in Education (SDE) in 1999. This marked the beginning of formalized disability educational research, theory, and practice, in academia. The SIG states that the purpose of disability studies is to examine the issues related to the interaction between disability and various aspects of culture and society. This field is focused on the numerous viewpoints of challenges that are defined and experienced by people with disabilities and how such incidences relate to social exclusion and oppression in society. Disability studies provides a means for critical inquiry and political advocacy to occur due to the concentration’s ability to effectively utilize existing approaches from the humanities, humanistic/post-humanistic social sciences, and the arts.
According to National-Louis University’s report on disability studies in education, since the official development of this particular academic focus, the field has grown to include numerous peer-reviewed publications; a sponsored annual conference, one short-lived journal (Disability, Culture, and Education); annual meetings and sessions at AERA; one book series (Disability Studies in Education by Peter Long); and several undergraduate, graduate, and doctoral programs and concentrations in disability studies or disability education. Syracuse University, University of Washington, UC Berkeley, and National-Louis University are just a few higher education institutions to offer this unique concentration.
Though disability studies is one of the younger fields to have emerged in academia in the later part of the 20th century, its importance in establishing a deeper understanding of the societal issues, history of disability rights, and discriminatory practices that people with disabilities have endured, and continue to face, cannot be overlooked. Having such a concentration signifies that the lives of people with disabilities are worthy of study and consideration when it comes to researching (and implementing) the best practices to provide equal opportunities and fair treatment among those within this large minority group, as well as create a means of learning imperative lessons from the past when it comes to the mistreatment and erroneous ideologies about how and why people are disabled in our society.
The need for more programs to be made available in the educational realm so that more professionals are equipped with the knowledge and understanding that is needed to effectively advocate for people with disabilities is necessary. I know personally how I would have relished at the opportunity of either minoring or majoring in such a concentration during my undergraduate career. A strong stance must be initiated to broaden the availability of disabilities studies in higher education, as well as ensure that professionals, from social workers to elementary to secondary educators, are armed with more than just a general understanding of what the term disability means and to whom it is applied to. When professionals have a deeper comprehension about the history and lives of those with disabilities, then advocacy efforts to improve existing barriers will become more direct and potent.
(Feature headline image: Courtesy of Sign Collection.)
Hurricane Irma: Two Things Helping Professionals Need to Know About People with Disabilities
The state of Florida has called for 17,000 volunteers to help out with the post-Irma recovery process, but there’s one population that are often forgotten in the crush of storm evacuation and disaster recovery efforts, and that is people with disabilities.
Recently, at a social work conference, I was told “disability is not a social work issue,” which is a shocking statement, given that over one-fifth of the United States’ population has a disability according to the Centers for Disease Control. All too often, people with disabilities are left feeling invisible in our society – and as helping professionals, we need to right this wrong. In order to begin to do this work, especially given the impact of Hurricanes Irma and Harvey on our country, here are two things helping professionals need to know about people with disabilities.
Storms such as Irma and Harvey are very likely to have a disproportionate impact on people with disabilities – see Professor Rabia Belt’s commentary on this topic. During Hurricane Katrina and surely many others, it came to light that many people with disabilities were unable to evacuate due to mobility limitations, equipment needs, staffing needs, requirements for service animals or just having a low income.
We know that people with disabilities are much more likely to live in poverty in this country, and this can really take a toll during storm evacuations and disaster recovery. In fact, during Katrina, 155,000 people with disabilities aged 5 and up lived in the cities hardest hit by the storm – and unfortunately, a disproportionate amount of Katrina’s fatalities involved this population. Helping professionals need to see people with disabilities – and seek them out prior to, during and after a storm.
Given these realities, it is important to design disaster preparedness and recovery efforts so that they are accessible to all – including people with disabilities in keeping with the Americans with Disabilities Act. In the disability community, stories about people with mobility limitations, nursing needs, and service animals being refused shelter or assistance are making the rounds. We must do better.
The National Council on Disability wrote an extensive report on the topic of disaster preparedness, and it provides great guidance for disaster planning and recovery efforts – be prepared! There is also specialized guidance on how to create accessible programs and spaces for people with disabilities during and after a devastating storm in a way that promotes self-determination.
People with disabilities do not want to be victims, and helping professionals should support their self-determination during evacuations, sheltering and recovery. Portlight Inclusive Disaster Strategies, an organization based in the southern United States, is the go-to source for assistance with people with disabilities during these storms. Please use their hotline for assistance with your clients with disabilities 1-800-626-4959.
Their motto is drawn from the disability civil rights movement, “nothing about us without us.” As you gear up to provide help before, during and after these storms, keep this motto in mind and let it guide your practice. We can do better for people with disabilities, and we will.
A Teacher’s Response to Charlottesville for Social Workers in Practice with People with Disabilities
I am currently teaching a course on social work practice with people with disabilities. The course uses an intersectional lens, acknowledging the fact that people have many intersecting social identities that can result in varying types of privilege and oppression. As such, I had to provide some venue for my students to address the Charlottesville violence and hate speech. The following is a discussion prompt I provided for them to respond to, and I thought other social work educators might be interested in seeing this so that they could use it and/or modify it for their own courses. Feedback welcome!
Discussion prompt: As we are part of a course on social work practice with people with disabilities in the United States of America, I would be remiss not to address the events of this past weekend in Charlottesville, Virginia. As you have already likely gathered, there are important links between the White nationalist/Nazi actions in Virginia, and the work we do as social workers with people with disabilities – who often have intersecting marginalized social identities.
Many of the perspectives held by members of White nationalist/Nazi groups are clearly identifiable as racist, sexist, homophobic, anti-Semitic and even Eugenic in nature. Therefore, as social workers practicing under our particular Code of Ethics, we need to respond. If you need some quick resources to learn more about the dynamics that led to the Charlottesville rally and violence, you can check out the “Charlottesville Syllabus” at this link.
As disability-aware social workers training to view the world through an intersectional lens, we need to acknowledge and act on what has happened in Charlottesville. That means that we need to engage in discussions – often difficult in nature – with our families, our co-workers and with our clients. Let’s start with our work with clients.
One prominent disability civil rights activist, Rebecca Cokley, has noted that when terrorist incidents like this occur, people with disability count the minutes until ableist claims about the ‘crazy’ person who engaged in terrorist acts roll in. That may be an important place for you to start a conversation with a client with a disability in a week like this one. In this essay, Ms. Cokley points out another important link between disability and trauma. She calls for the disability community (and disability service providers) to reach out to those whose disabilities came about as a result of trauma, such as the people who were injured and impaired by the car driven by the White nationalist/Nazi from Ohio. Her essay is short, easy to read and compelling and you can find it here.
It is also important to remember, however, that our work is not just direct care work. Remember, the NASW Code of Ethics states that we must fight for social justice, as it is a core value in our profession. We need to do more than discuss these difficult topics amongst ourselves, we also need to take a stand on them. I am fond of the idea that if we are not part of the solution, we are part of the problem.
It is important to move beyond ideas of ourselves as “good” people and work towards actively addressing the webs of oppression that exist in our world, little bit by little bit. Here is an example about how ADAPT, the national disability civil rights organization, has taken a stance on the events in Charlottesville. Where might you be able to stake your claim to your own stance? Check out these ideas for 10 ways to fight hate from the Southern Poverty Law Center.
Finally, I want to leave you with a challenging set of questions. Although there are many facets to the NASW Code of Ethics, let us remember that the mission of the social work profession is rooted in a set of core values, including the idea that there is dignity and worth in every person. How would you respond to a client with a disability who actively identified as a White nationalist/Nazi if you were to be assigned such a client today? What if she didn’t want to work with you because you were a woman of color? What if she had been arrested for street fighting during the “Unite the Right” rally and was open about her wish to “hurt Leftists?” Based on your training thus far in this social work program, how would you approach your work with this client?
How would you respond to a client with a disability who actively identified as a White nationalist/Nazi if you were to be assigned such a client today? What if she didn’t want to work with you because you were a woman of color? What if she had been arrested for street fighting during the “Unite the Right” rally and was open about her wish to “hurt Leftists?” Based on your training thus far in this social work program, how would you approach your work with this client?
Please leave your comments about this discussion prompt and how it might be improved or expanded upon. All feedback is welcome.
Becoming the Champion for Supported Autonomy
Autonomy is often used to mean independence. Though their dictionary definitions are similar and they are synonyms of each other, I like to talk about autonomy in a slightly different way.
For me, autonomy is having the choice over when I am independent and when I am dependent. It’s similar to the notion of interdependence, except the latter, interdependence, suggests an ongoing process of co-operation or collaboration. Perhaps autonomy could include the choice of interdependence as well, but for now, I want to focus on the aspect of choice.
Many disability services have, at their core, a desired outcome of independence. Functioning on one’s own, without the help of others, is considered success. Dependence on others, by comparison, is seen as undesirable, costly and, hence, unsuccessful in the wonderful world of disability service provision. In the even more amazing worlds of case management and needs assessment, however, dependence could be synonymous with abject failure — or worse: disaster!
This obsession to make disabled people independent has always seemed absurd to me. No one is completely independent, after all — we depend on builders for houses; lawyers and police for protection (sometimes one from the other); artists to adorn our walls — and so the list goes on. And while cleaning the house is a relatively simple chore, many choose — and still others actually need — to pay others to do it for them.
So if someone, on account of their unique function, can’t — or at least find it difficult to — get dressed in the morning, why is so much emphasis placed on finding ways for them to do it themselves, independently, no matter the time or effort spent?
When I began to live “independently” at around 20 years of age, I did so with no support, apart from a flatmate who was as — or more — often out than at home. I’d start my day spending an hour abluting and getting dressed, including donning the most horrendously style-destroying footwear — gray sneakers with velcro straps — because I couldn’t tie laces. Then I’d have breakfast, only to have to begin the tortuous task of washing dishes, usually from the day — or more — before.
By about 11 am I’d stop for a cigarette, all the while relishing the anticipation of cleaning the house — be it vacuuming, dusting, cleaning the floors or, god forbid, the frigging toilet. By the time 1 or 2 pm came around, I was physically knackered, often in pain and more or less good for nothing for the rest of the day.
But, I was being independent.
I can’t remember how long it was that it took me to unbrainwash myself — longer than it should have, given I tend towards masochism as one of my learning edges. But I finally managed to process the cognitive dissonance slowly creeping into my consciousness: if “independence” meant doing nothing more than menial chores in unfashionable shoes, well, I didn’t want to be independent.
So, I threw myself into the wonderful world of needs assessment and disability support services (WWNADSS), learning very quickly the two cardinal rules of getting one’s needs met: 1. never say you can do something but it’s difficult, and 2. never say you can do something but it’s difficult.
Because something being difficult meant there could be an assistive device, designed to make things easier (ergo increasing independence). It could actually be badly designed such as the unfashionable velcroed shoes or more than likely useless and more time-consuming.
Thus, I learned the valuable lesson of black and white ability — not the competence to change ethnicity but rather that, in the WWNADSS, there were only two answers: 1. I can; and 2. I can’t. Later, I learned a third answer, the dismal future speculation: if I keep doing this one thing now, it’s highly likely to fuck me up so badly that, in 5-10 years’ time, I’ll be unable to do 3 things. Ergo more, perhaps unnecessary dependence will now equate to less independence henceforth. Net result, more independence. Success! A great rule that folks, learn it.
I exaggerate in jest — this was the 1980s and things are slightly less black and white these days (though its legacy lingers). I write this off the back of a lecture I did with case management students at AUT University yesterday. My point was that they reframe their role, from being the champion of independence, to being a facilitator of supported autonomy. In other words, guiding people to choose where and when in their lives they want to be independent and where and when they want to be dependent. It may seem an obvious change in understanding, but the old independence imperative is still surprisingly prominent in the WWNADSS as well as case management.
Who knows, had I not realised the impact of its potentially paralysing grip on my life, independence could have stopped me writing this post as I look back on a successful 22 years’ professional career. I could still be washing the dishes.
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