We, at PACE, would like to share an essay Rebecca Oram, who is one of our E-Waste Crew members, wrote for her social work class. The message is powerful, thought-provoking and written through the lens of experience living with a disability. Her frustration, despair and anger at a broken system, that creates more barriers than it alleviates, comes through her essay loud and clear. Our hopes for sharing this is to create a better awareness of the reality for people living with disabilities, and that awareness helps to build a better system.
In Sickness & in Hell: Social Work & Making Disability Rights
THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES
“Equality and non-discrimination rights are used throughout the CRPD and the treaty contains civil, political, economic, social, and cultural rights that, while based on rights in existing human rights treaties, are sometimes adjusted or expanded to address the specific issues faced by PWDs. (79) For example, all discrimination on the basis of disability (both direct and indirect) is prohibited and states must “take all appropriate steps to ensure that reasonable accommodation is provided.” (80) There is a right to accessibility whereby states must take measures to ensure PWDs have access on an equal basis with others to the physical environment, transportation, public infrastructure, public facilities and services, and signage in public facilities in Braille, as well as easy to read and understand formats. (81) The right to equal recognition before the law in article 12 includes safeguards for PWDs concerning the exercise of legal capacity including using the supported decision-making approach rather than guardianship or substitute decision-making. (82) The right to freedom from exploitation, violence, and abuse applies inside and outside the home and also covers gender-based aspects of such behaviour. (83) Other rights include independent living and inclusion in the community, personal mobility, freedom of expression, and equal rights with respect to fertility and child-rearing. (84) Economic, social, and cultural rights include the rights to education, health, habilitation, and rehabilitation. (85)Article 6 of the CRPD focuses on women and girls with disabilities and article 7 on children with disabilities, with the best interests of the child principle found in this and other sections of the CRPD. (86)” (Reif, 2014).
The fact of the matter is while PWDs (persons with disabilities) supposedly have the protected rights of any marginalized demographic, the reality is that they are seen as a special interest group. PWDs are continually the ones left out of social progress. Even in this course, and I deeply mean no disrespect to this course, this professor, or any of the totally worthy subjects covered, but if time constricts what is to be taught, disability related subject matter is what gets the cut not just in this classroom, but in other classrooms, and all the way up until SW students become professionals, and further up until they become administrators, right up until they become policy makers. While there is a segment of society and representatives that believe eugenics should be applied to the disabled, our most current policies are often more a product of extreme ignorance, a failure to understand what these policies mean for the people they are applied to, and an effort to dissuade people from collecting income assistance by making it so woefully inadequate and undignified that the disabled masses will somehow find themselves less disabled and less in need of help, and those who remain who have their disabilities compounded by abject poverty, a lack of medical care, and robbed of dignity are merely collateral damage.
Disability related issues rarely make the cut for mainstream news, and if they do, it’s almost always newly disabled people who still have ample ties to abled life and an abled community like Humboldt Bronco survivor Ryan Straschnizki advocating for change after navigating life for 5 years in a wheelchair (Kaufmann, 2023). Meanwhile, lifelong wheelchair users like Rodney Hodgins who has had spastic cerebral palsy since birth makes the news for being forced to drag himself off an Air Canada flight. (Messiner, 2023). The uncomfortable truth is, the longer someone has a disability, the less ‘deserving’ they are seen as in society. The disabled community knows, for every story showcasing society’s utter failure to provide a moniker of dignity or even safety, countless go unacknowledged and/or unreported.
It’s starts with students. Students need to be made aware of when a social subject is being left out. They need to learn to recognize when a specific subject is being consistently left out of course after course in their program, and they need to verse themselves on that subject matter. As 20% of the population lives with a disability, and no doubt that number is higher for clientele needing social work services, students need understand that disability challenges and rights are anything but irrelevant material. SWers (social workers) on the micro level need to recognize when a disabled person presents with a problem like domestic abuse that it may in fact be a eugenics problem the same way an indigenous person’s domestic violence problem may be viewed as a product of the Indian Residential School Legacy (also eugenics).
Micro level SWers need to understand the complications being a PWD income recipient might face. They need to understand that for many abused PWDs the choice comes down to being abused or being homeless. Micro level SWers need to understand and break free of the stigma of disabled people being asexual organisms. Maslow’s Hierarchy of Needs applies to disabled people as much as it does non-disabled people. Denying the sexuality of disabled people perpetuates eugenics and robs individuals of dignity and quality of life.
Micro level SWers need to understand that disability can intersect with any other marginalization, and many people who should be collecting PWD income assistance are not receiving those benefits as a result of a system that measures success in how little they pay out. Unlike Alberta, there is no backpay in BC for prolonged and delayed application processes. The Ministry of Social Development & Poverty Reduction has highly incentivised themselves to deny benefits and obfuscate regulations and services provided. When people are dealing with cognitive impairments, severe pain, traumatic loss of function, distressing prognoses, etc. navigating a system that actively works against claimants can be genuinely impossible and require a social worker’s advocacy. Many are not aware that services exist to navigate MSDPR services. Eligible PWDs go without their “income of last resort” a term coined by former minister Shane Simpson. If PWD benefits are to be regarded as an income of last resort, then denying eligible people this can legitimately be a death sentence if not a life on the streets sentence or total dependence on another which is a recipe for abuse, neglect, and severe isolation. In other words, there is a demographic that is quietly being removed from society.
For the 100,000 PWDs who are collecting benefits, the security of those benefits is not ensured. While specific reasons are needed to cut someone off benefits completely, benefits can be withheld at the discretion of the worker for seemingly any reason including no reason and
fictious reasons. PWDs are keenly aware of this. Rocking the boat can easily jeopardize someone’s rent and other vital needs. For this reason, many PWDs try to fly under the radar. It’s not uncommon for PWDs to not claim additional benefits they are entitled to like medical transportation money. While many factors contribute to many PWDs unwillingness and hesitancy to advocate or actively protest the injustices that the system provides, including transportation, accommodations, and limitations of the disability, fear of retaliatory harassment is very real.
Despite the fear and intimidation PWDs experience trying to access services, The MSDPR is one of the most complained about Authorities in the province according to the BC Ombudsperson, Jay Chalke (2022). In the 2021/2022 report, they were the fourth most complained about behind agencies dealing with far boarder sections of society including the Ministry of Health, ICBC, and the MCFD. As bad as that sounds, it’s actually an improvement, as in some past years, the MSDPR topped the list, and by a wide margin. While some governments are more favorable than others for disability rights and treatment, eugenics is still entrenched in the operating system the ministry uses. The unpalatable truth is BC forced surgical sterilization on ‘feeble minded’ people in the 1930s (McLaren, 1986). This province now forces social sterilization on disabled people who only have last resort income at best.
PWDs are highly penalized for engaging in ‘marriage like’ behaviour. This not only dissuades people from pursuing romance, but for those who do, if the partner makes enough to support themselves, they are expected to fully support their PWD partner even if they don’t make enough to support two people. If both are on PWD, they both have money deducted from their benefits. For those who do enter into ‘marriage like’ relationships, they face punishing losses of income, and a reliable recipe for profoundly difficult to escape domestic abuse, a complete lack of financial independence, isolation, precarious situations…to name a few. These are hardly conditions for which to intentionally bring a child into. A child of a PWD faces the same barriers to thriving as a PWD does from systemic curtails. A teenage child’s earnings are considered part of the household and not the child’s for which if it exceeds the household cap, it will be fully deducted. Only recently did the MSDPR stop deducting child support dollar for dollar. PWDs and their offspring are actively prevented from thriving. The system discourages meaningful long-term relationships, the system caps earned income so that PWDs cannot surpass the poverty line, PWDs consistently report a lack of medical services and devises related to their disability that affect their ability to socialize, retain quality of life, or even physically leave the house. There are more and more accounts of PWDs choosing MAiD not because their medical condition makes their life unworthwhile, but because the circumstances that these policies create does. A micro level SWer needs to understand that inability to thrive, engage in romance, provide a healthy environment for a child, advocate/protest are not disability problems, these are eugenics problems.
The reality though is that, at the micro level, SWers are doing damage control at best. They have no way of addressing the overarching beast and the operating system it runs on. At a mezzo level, a SW can do more damage control. Perhaps they can organize support groups that serve to alleviate social isolation. They may be part of an agency that finds appropriate and supportive employment for those who are able to work. They may be in a position to educate the public by increasing awareness and reducing stigma and ablism. School SWers may support children of PWDs who, even if not disabled themselves, face the same systemic oppression their parent does. There is a patchwork of agencies that serve to mitigate living with having one’s human rights perpetually violated. As necessary as this type of work is, it’s still damage control. None of these great causes serve to remedy the structures that perpetuate eugenics against BC’s disabled population.
For SWers to be effective at rectifying the overarching system, it needs to be done at the macro level. I would argue the effective SWers almost invariably need the front-line experience. Even then, a seasoned SWer’s perspective is not enough. Effective SWers need to advocate for lived experience representation in the agencies they work in. The predominate slogan during the American disability rights movement was “nothing about us without us” (Pelka, 2012). Right now, a MSDPR employee cannot be known to associate with someone collecting PWD benefits. They are essentially not even allowed to be informed by lived experience. Macro SWers need to call that out. They need to insist that lived experience informs policy, and they need to understand what tokenism is and how to recognize it and address it. Macro SWers need to understand the barriers to having effective lived experience representation which of course are the same barriers that keep PWDs from thriving at all whether systemic or a product of PWDs’ disabilities. SWer need to recognize that a PWD can have a wealth of knowledge but may not be able to apply it in a policy maker role. Macro SWers need to pressure the government into creating training programs that are accessible, incentivized, recognized, and effective at turning lived experience into good policy making. The question policy makers always seem to ask is “where is the money going to come from?” as if balancing the budget on the backs of BC’s most vulnerable population is at all acceptable, but SWers who have worked in more than one level and/or more than one sector seem to know and realize that we rob Peter to pay Paul. When the MSDPR saves money, it’s all too often at the cost of another authority like Ministry of Health, MCFD, criminal justice, etc. Macro SWers need to call for cross ministry/cross agency cost analyses. The hidden fiscal costs of eugenics need to be uncovered if non-SW policy makers are ever going to be motivated into effective change. Most of all, Macro SWers need to understand that eugenics is inherent in the operating system that the MSDPR uses. Fixing it rule by rule is never going to cut it. If the problem of eugenics among the disabled population is really going to be addressed, the operating system needs an overhaul.
Written by: Rebecca Oram
Class: SOCW 200A
Professor: Nicole Johnson
Submission Date: Jan. 25, 2024
References:
BC Ombudsperson (2022) Annual Report. Accessed 25/01/24 <https://bcombudsperson.ca/assets/media/OMB_AR_2021-22_WEB.pdf?fb clid=IwAR32H5IEoDqmei60nZC5k0SSFI_x3d-LHvZ6fV8gM4qBVxiusYQI2-cx 6n8
Benoit, C., Mellor, A., & Premji, Z. (2023). Perspectives on Sexual Citizenship for People Living with Disabilities: A Response to Commentaries. Archives of Sexual Behavior, 52(8), 3285–3290. https://doi.org/10.1007/s10508-023-02739-8
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https://calgaryherald.com/news/local-news/humboldt-broncos-crash-surv ivor-joins-disabled-advocate-group/wcm/94fb5fe5-b4a3-4937-afd0-65a07 623c815/amp/?fbclid=IwAR2ppXbnStVo0uSE6kU5Rrk3fKmfn1w-X7WUnx O_e-DpObpP8RYW06n4g4Q
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Messiner, D. (2023, Oct. 29). ‘Air Canada needs to step up’: Disabled B.C. man forced to drag himself off plane. Global News.
https://globalnews.ca/news/10057176/disabled-bc-man-forced-drag-hims elf-off-plane/amp/?bclid=IwAR02t9Y4bEInNiWyNrebCli1CbPOO4cusM_o9 ei1hbCoIXOI5Xo6URHrT6U
Pelka, F. (2012). What We Have Done : An Oral History of the Disability Rights Movement. University of Massachusetts Press.
Reif, L. C. (2014). Ombudsman institutions and article 33(2) of the United Nations Convention on the Rights of Persons with Disabilities. University of New Brunswick Law Journal, 65, 213.
