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A review of the debate around access to euthanasia in canada for people with disabilities

On mai 15, 2024 by labo recherche Standard

Author : Rim Benrhazi

Abstract: 

This article focuses on the discourse surrounding access to euthanasia in Canada, which is very permissive when it comes to the use of euthanasia. The expansion of access to euthanasia to individuals with disabilities who don’t face imminent death has raised complex ethical considerations ever since its creation, with the ruling of the Supreme Court in 2016. This new law has ignited a fire in the disability community, which has allowed them to highlight issues that they face both in society and in the medical sector. To get a better look at this situation, we will analyze the arguments brought forward by people with disabilities-which are mostly against Medical aid in dying (MAID)-in their testimonies. Supporting evidence will sometimes be presented if the argument holds true, and other times, we will add nuance by pointing at specific data and facts. In doing so, we will gain a somewhat complete summary of the issues faced by people with disabilities in Canada.

This research article has been written by Rim Benrhazi.

Introduction:

People with disabilities form one of the most marginalized groups of people in the entire world (1). It has been established that the reason for this exclusion is the stigma surrounding disability. Stigma is a sociological concept that refers to the almost unconscious process of discrediting an individual by other people against the person’s will because of a trait they have that is uncommon (2). When one has a disability, strangers may look at him as a « tainted » and « discounted » human. For instance, people could think that a person with a physical disability is unattractive, impotent, asexual, receiving welfare payments or of lower intelligence. Consequently, the person may be immediately discounted as a possible lover or friend on the basis of having a disability (3). To avoid any confusion on the word “disability”, I will be referring to the definition provided by the Canadian Act of Accessibility: « any impairment, including a physical, mental, intellectual, cognitive, learning, communication or sensory impairment—or a functional limitation—whether permanent, temporary or episodic in nature, or evident or not, that, in interaction with a barrier, hinders a person’s full and equal participation in society. » (4). In other words, a disability is an attribute or a characteristic that differentiates someone from others, which can limitate or degrade the quality of life and the social relationships that a person can hope to cultivate that this person has to live by. This is due to the culmination of a somewhat unaccommodating society to physical or mental disabilities and the limitations that said disability causes  already. The field of this research paper will be constituted of testimonies of people with a physical impairment that results in disability. A physical disability stems from natural causes or can be developed later in life and it constitutes an obstacle to performing everyday activities, according to the Canadian Disability Benefits (5). One can gather from these definitions that a diagnosis isn’t required to actually fit in this population; however, the data used and analyzed includes only people with disabilities that are recognized as such by the Canadian government.  

One could note that the Canadian disability rights movement flourished after the Second World War, mostly because civilians saw the help provided by the government to veterans of World War I who had come home injured, or amputees. Therefore, after World War II, people with disabilities gathered and, with the help of veterans with disabilities, fought for rights and equality (6). Still, according to a Canadian income survey, in 2021, 16.5% of people with disabilities aged 16 and over lived in poverty, compared to 8% of people aged 16 and over, without disabilities (7).  Those numbers show that people with disabilities are twice as poor as people without disabilities. This is a recurring issue that the testimonies of many physically disabled shed light upon. It is also possible to add that the economic sector is not the only one in which people with disabilities have to face hardships. Indeed, in the medical sector, people with disabilities may face ableism. To define the term ableism I will quote Fiona Kumari Campbell who is a disability theorist and researcher in disability studies, “a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability then, is cast as a diminished state of being human.” (Heidi L. Janz, PhD, 2019 (8 )).

Former research has proved that ableism is ongoing in the medical field, and can be intensified during crisis. According to data from the NPHS (National Population Health Survey), Canadians with disabilities have  45% more chances of structural-based unmet health care needs (Rebecca Casey P.hd, 2015 ( 9 )). Furthermore the advent of a world virus, Covid-19, had a negative impact on the health care received by people with disabilities in hospitals (Matthew B. Downer, and Sara Rotenberg, 2023 (10)).

Overall, even if the statements above state the imperfections of the Canadian government and healthcare, one could still say that Canada has made a lot of efforts when it comes to the  accommodations provided to disabled people since the world wars. However, the recent legislation surrounding euthanasia can be seen as concerning. The former bill, now law about euthanasia mentioned above is Bill C-7 (2016), which repeals one of the eligibility criteria of euthanasia: foreseeable death, and renders people with disabilities eligible for euthanasia even if their death is not foreseeable.  Originally, the creation of this law is the result of two cases: Truchon v. Canada and Lamb v. Canada in 2019 .(11). In both of these cases, people with severe disabilities brought the mention that the criteria of “foreseeable death” was unconstitutional. Upon these trials the Superior  Court of Quebec determined that the criteria violated sections 7 and 15 of the Canadian Charter of Rights and Freedoms (12).  The former guarantees to Canadians the right to security, life and liberty, and the latter affirms that « every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination« . The Parliament passed this bill on March 17, 2021.

What is interesting to note is that the passing of this bill happened directly because of the cases brought by people with severe disabilities that wanted to end their lives, whereas the testimonies that will be analyzed are mostly from people with disabilities who are firmly against this bill. This goes to show that there is a clear conflict of interest within the disability community.

Michel Foucault says to describe modern discourses, that there is « an immense and multiple battle, but not one between knowledge and ignorance,but an im-mense and multiple battle between knowledges in the plural—knowl-edges that are in conflict because of their very morphology, because they are in the possession of enemies, and because they have intrinsic power-effects.”(13)

So as Michel Foucault points it out, these differing point of views coexist in the disability community because they both stem from different knowledge and experiences of what it’s like to have a disability in Canada, making both of them legitimate opinions.

It is important to note that the people with disabilities who fought for the passing of this bill, probably have a disability that is much severe than the average person with disability that is against this bill. Although it could warrant the passing of this Bill, we have to consider the remainder of people with disabilities.Consequently, the problem that lies therein is: Should the right to die supersede the protection of vulnerable people, the remaining of people with disabilities?

According to the ideas of American sociologist Saad Nagi, explained by Pierre Rabishong, a disability is not only medical but also social. The gravity of a disability can only be estimated when we ponder the environment of the person with said disability, meaning that a physical impairment is only as disabling as society lets it be (14).  Taking that into account, one could wonder if this former Bill is an implicit way for the State to admit that it has failed to provide citizens with severe disabilities with enough help and accommodations, which consequently led to the advent of demands to use euthanasia by people with severe disabilities. 

This new law, combined with the failings of societies around the world-including the Canadian one-about health care needs and social aid towards people with disabilities, puts the whole progress made in Canada into question and has sparked an outrage in the disability community, as well as in the bioethics sector.The mostly unfavorable reaction to this law by people with disabilities can be summarized by some testimonies of the Disability Filibuster. The Disability Filibuster is an online virtual space where people protest the passing of Bill C-7. Even though the bill has already been legalized, the Disability Filibuster is still active and gives a platform to people with disabilities and other activists to speak about the issues faced by people with disabilities and shed light on the covert, overt and structural discrimination they face. (15).

We can note that the conversation around former Bill C-7 is not entirely focused on the question of life and death that generally prevails in discourse surrounding euthanasia, but instead, what prevails in this discourse is the notion of structural coercion. Indeed, these testimonies all agree that there is structural coercion at play, meaning that the living conditions of people with disabilities may entice them to use euthanasia, more than the average person without disability.

Therefore the goal of this research paper is to see why it can be said that the conversation around former Bill C-7 has the principal function of addressing issues that people with disabilities face to assert that the passing of this Bill is symptomatic of significant issues that people with disabilities face. 

This research paper will be based on the analysis of the testimonies of Disability Filibuster panelists against the passing of Bill C-7. The testimonies chosen provide us with a certain summary of the issues faced by people with disability, which we will sometimes complete. The law, facts, quotes of books, or from people presented will serve as supporting evidence or counterarguments and nuances to the statements of those panelists.  The time frame chosen is from the legalization of MAID (Medical Assistance In Dying) in 2016 until 2023, because that is when this research paper has been written. Seeing that the legalization of MAID is still recent, having a large time frame will allow the use of more data.  

So in order to answer the question: What are the issues faced by people with disabilities that testimonies against MAID bring forward? 

We will start by addressing the institutional issues that these testimonies bring forward, and then we will see the social issues that border on ableism, and the perception of people with disabilities in the medical sector.

 Firstly, we can note that the testimonies make a point of showing that the government doesn’t see people with disabilities as a priority by tackling many issues that stem from the institution and laws, such as eligibility criteria for disability benefits and housing, work and transport accommodations for people with disabilities or the lack thereof. So, the first axis focuses on issues that stem from institutional barriers that the testimonies named, and that are commonly cited when people with disabilities voice their day-to-day struggles.

Marriage inequity a lingering issue:

One of the issues that is frequently mentioned in the testimonies is marriage inequity in Canada. This issue is caused by the eligibility rules that specify income cutoffs to be eligible to receive benefits. Kate McWilliams, a panelist of the Disability filibuster, shared her personal experience in regards to this criteria to receive disability benefits. She says:  » I was in BC[British Columbia]  at the time when I became disabled and I needed to get on benefits and the income cut off there was 14 400$ for a family of three. For my partner, myself and our daughter. So if he made more than fourteen thousand four hundred dollars I am too rich to get disability benefits. » Nowadays, the income cutoff in BC has changed but remains quite close to what the panelist described. In January 2024, the exemption limit is near 19,440$ a year for “a family with two adults where only one has the Persons with Disabilities designation.”(16). Seeing that the minimum annual income for a four person family is $80,000(17)), we can observe that to remain eligible for Disability benefits, people with disabilities need to keep themselves poor. 

The panelist Kate McWilliams also adds that the eligibility criteria that must be met to access income disability, depends on whether the person with disabilities lives in common law and the income of their common law partner in all of Canada, regardless of the state. It is also important to note that a separation will result in changes in the benefits received. In British Columbia, common law means  » lived together for the last three months in a row, or for 9 of the last 12 months, in a marriage-like relationship where one or both of you depended on the other financially ». (18)

In her testimony, Kate McWilliams asks: “Do you want to get a partner if you risk losing benefits? » to summarize the options left to people with disabilities. Those claims are supported by a study conducted by the government of Canada, « Low economic thresholds had serious implications for some participants. In a few instances, respondents shared that their benefits would be lost following marriage, resulting in their partners becoming entirely financially responsible for all of their needs. »(19 ) This  testimony also addresses the two situations that this law may cause: the situation where a disabled person doesn’t marry or live with their partner in order to keep the disability benefits, and the opposite situation when they marry or move in with their significant other and become dependent on their spouse or partner. For the former situation, she comments on the loneliness that people with disabilities must feel “it is so socially isolating for a lot of people”, and according to an Angus’ Reid survey, 38% of Canadians with a physical disability report suffering from social isolation and loneliness (20) Earlier the stigma around being disabled was mentioned, it showed that people with disabilities are overlooked friends or romantic partners. So there is already a social barrier to the creation of relationships, and the mariage inequity adds another barrier that discourages people with disabilities from cultivating relationships.  For the latter situation she says that  » it’s an easy set up for domestic violence situations and abusive situations when one partner is forced to rely financially on the other. » Like, the panelist mentions it, the financial dependence of the person with disabilities makes them more vulnerable and more likely to be subject to abuse. This financial dependence could create a power imbalance which could later translate into abuse of a financial nature. According to a report made by the CCWE (the Canadian Center for Women’s Empowerment )  “Women with disabilities are more likely to report higher rates of Economic Abuse than women with no disabilities. Economic Abuse among women with disabilities can take the form of an abusive partner using disability allowance or payments, even in higher-income households.” (Laura Savage, 2018(21)). Even though this is not Kate McWilliams’s personal situation, this awareness of the possible situations of others shows solidarity and shows that she knows herself not to be protected against abuse from her common law partner. And justly so, in fact, women with disabilities are almost two times more likely than women without disabilities to be subjected to physical or sexual abuse from an intimate partner in their lifetime according to the same research paper. And in general, financial dependence discourages women from leaving an abusive relationship ( 22).

The importance of the testimony of Kate Mcwilliams lies in the fact that ever since the legalization of MAID in Canada, there has been a lot of discourse and media coverage on whether poverty could incite people with disabilities to use euthanasia. To exemplify the media coverage in question, we could refer to the TV report that was aired on Global News on 8 October 2022 ( 23), titled “How poverty, not pain, is driving some disabled Canadians towards medically assisted death”.  In this report, Les Landry, a 65 year-old man who is a wheelchair user, shares his struggles. He says that he is living off of donations coming from his friends on the platform Twitter. He comments on how his life changed and how Canadian society is not effectively enforcing measures to help people with disabilities to survive. He says: “Disability can happen to anyone at any time. I was doing good, I made 80-85 grands. Then I developed a hernia and then that’s when the surgery happened and that’s when the blood pressure went out of control. I developed epilepsy and the three mini strokes and things just fell apart ». Furthermore in the same clip, a medical professional Dr.Nahid Dassani is given the chance to speak on the legislated poverty that  people with disabilities face. It is important to note, that he explicitly said that he offers his services for poor people that live on the streets. And as he practiced, he came to notice that a lot of them were disabled. This prompted him to look into the living conditions of people with disabilities, and it also pushed him to show rebuttal to the former Bill C-7 (which allows access to MAID for people with disabilities with no foreseeable death) . During his interview he raises the question: « When people are living in such a situation where they’re structurally  placed in poverty, is medical assistance in dying really a choice or coercion ?« .  The analysis of the testimony of Kate McWilliams doesn’t enable us to answer this question, and that’s why this research should be only seen as an attempt to further engage the discussion by explaining the roots of tension or miscommunication between the government and people with disabilities in Canada. And for one, it can be said that the marriage inequity and the common law partner give the impression that the government is not willing to help people with disabilities if this responsibility can be passed onto someone else, namely a common law partner who could provide for a person with disabilities instead of the state.

Other than the legislated poverty that is mentioned in Kate McWiliams testimony, the part about social isolation and the risk of abuse because of the lack of financial resources that people with disabilities may face, also has its place in this debate, even though it may not weigh much in the decision to use euthanasia. The mental state and the nature of the social links that the individual has cultivated or been entrapped are important. Especially when they are so intimately linked with the financial situation of an individual with disabilities.

MCS disability a newly recognized disability: 

Furthermore, the testimonies also evinced the lack of accommodations for people with disabilities. One of the most striking testimonies is the testimony of Rohini Peris the president of EHAQ ( the Environmental Health Association of Quebec).  In her testimony she talks about MCS (Multiple Chemical Sensitivity), a disability that has only been recognized as such by the Canadian Human rights Commission since 2007. In a way, we could say that she relays or is the spokeswoman for people with disabilities due to environmental sensitivities (24).This disability and disease process jeopardizes the capacity to live in society because as  the name MCS suggests, exposure to chemicals, even something as common as fragrance, can harm the individual and constitute an obstacle to the autonomy of the individual (25). Since chemical products are everywhere in modern society, avoiding exposure to them is a tedious chore. Interestingly, the fact that this disability is due to our chemical environment contributes to the dismissal of those who may suffer from this disease. Still, people who have this disability are supposedly entitled to disability benefits. However, one could note that  “To date, this “right” has been very difficult to win in the majority, though not all, of the cases where people have tried.” The right being access to disability benefits. 

The dismissal of this disability is addressed by the president of EHAQ when she says » Often the first reaction to intolerance to chemicals and perfumes  indoors is disbelief and they are labeled and stigmatized by the co workers in the community and even some medical doctors. Insurance and other compensations are hard to come by as every effort is made to downplay and discredit the individual. »  This disregard of people with MCS is due to the fact that healthcare professionals who are familiar with MCS are hard to find. Therefore, it is difficult for people with this disability to get formal medical evidence for their disability, in order to file for insurance and social benefits (26 ).  Also, this lack of documentation can harm the relationships that people with MCS may entertain, since they can lose their credibility in the eyes of their relatives. 

The testimony also gives us an outlook on the situation of poor people with an MCS disability. « When one is at the lower end of the income scale, it’s a choice between paying rent and buying food. It is not uncommon that food kitchens are visited. The person is therefore chronically ill because they cannot eat less toxic food ». This testimony uncovers the food insecurity that people with a MCS disability have to face, and it also tackles the lack of resources that these people have. Those claims are confirmed by the Canadian Community Health Survey, which notes that food insecurity in Canadians with EH disabilities is around twice as common as food insecurity in the Canadian population. This survey also found that  “a significant number of persons with EH disabilities (approximately 10%) have a household income below $15,000” (Dianne Wintermute and Kathleen Cooper, 2019(27)). It is important to note that the low-income threshold in Canada for a household of a single person is $25,252 (28), which means that 10% of people with EH disabilities live below the poverty line by approximately $10,000. This extreme poverty is mostly due to the lack of accommodations made for people with MCS disabilities in the workplace. Indeed, finding employment that doesn’t entail exposure to chemicals such as perfume is difficult. According to the Canadian environmental law association people with EH disabilities stopped working within three years of symptom, on average (Dianne Wintermute and Kathleen Cooper, 2019(29)).

The president of EHAQ links the use of MAID to the living conditions of people with MCS. In her statement, she affirms that the reason why some people with MCS consider MAID is because of the lack of adequate housing conditions. She says « they do not want to die, they just cannot find real options for housing » To support the fact that affordable and livable housing is rare, I will simply refer to the report made by  the Canadian Commission of Human Rights in 2007 a few months after the recognition of MCS as a physical disability. In this report, it is said that “Generally, building standards are intended for the safety of a building, rather than its impact on health, and as such are particularly unaccommodating in relation to environmental sensitivities.”(30). Seeing that recent reports made by the government of Canada state that there is yet to legislate a new policy to guarantee adequate housing options for people with MCS, we can assume that people with MCS still face harsh living conditions. For instance, in a recent report named Accommodations for Environmental Sensitivities, it is said that “The researchers have not identified decisions specific to fragrance policies or other decisions that relate to the issues of enforcement against service recipients or in housing.” (31) One could add, that this is especially concerning when people MCS disabilities are entitled to appropriate housing under the Fair Housing Act.(32) 

MCS disability and the struggles faced by people with this disability are interesting to include in a conversation about MAID because of the infamous case of Sophia, a young woman with MCS disability who died on 22 February 2022 using MAID because she could not find adequate housing. In her testimony for The Disability Filibuster, Rohini Peris (the president of EHAQ) reads a letter written by her MAID doctors to the government of Canada, where they say: “We physicians found it unconscionable that no other solution was proposed to this situation other than MAID. We urge you to do something and communicate with us as soon as possible”. The letter was never answered. This shows the awareness of physicians who practice MAID and, more importantly, the failure of the state to ensure that MAID will not be used because of the lack or partial lack of measures meant to include and accommodate people with disabilities in society. Although this case is simply an example, it can surely be used to open up a conversation about the unplanned issues that stem from MAID. 

However, one could argue that the case of MCS is a complex and very specific case of disability, and perhaps too specific for the issues faced by people with MCS disability to be put in the same bracket as issues faced by people with a more common disability.For instance, as we’ve mentioned earlier, having an MCS disability adds another layer of difficulty in finding housing, since the person needs to be isolated from any chemical products, even the ones coming from their neighbors.   

Furthermore, one could say that the lack of willingness from the state to deviate from strict definitions of disability, at the expense of people with MCS, for example, could in part be due to a disposition to avoid wasting money, but it could also be attributed to a partly-founded distrust of the legitimacy of the MCS disease process. Indeed, if we look at the symptoms of MCS disease, we can see that they range from nausea, dizziness and fatigue to chest pain and breathing problems (33). The particularity of this disease is its capacity to evolve rapidly, since exposure to chemicals is mandatory to live as a functioning adult in modern society. However, its trigger, which is exposure to chemicals, and the vague and subjective symptoms make the disease really easy to emulate. So we can conclude that the lack of medical practitioners able to clearly diagnose it is intertwined with the state’s feeble progression in the process of treating it as any other disability and following through with the recognition of MCS as a disability. 

Summary of issues faced by people with disabilities:

Consequently, if we wanted to get a clearer look at the issues faced by people with disabilities, we might want to separate them into different categories to emphasize what their greater cause is. The issues cited can be found in a report made by the government of Canada (34). We could therefore imagine 3 different categories:

• One of the issues for which the state is mostly or fully responsible, such as transportation accessibility issues, housing issues, educational barriers and difficulties in navigating the system of benefit and social aids in place. For instance, creating a barrier-free transportation system is the goal of CTA (Canadian Transport Agency) and a survey conducted in 2021, found that 63% of people with disabilities who used federal transportation faced barriers (35). So it is safe to say that this issue may still be ongoing. Furthermore, housing is mostly the responsibility of the State, as one can guess from the multiple housing programs from the state. Educational barriers are also part of this category since the funding for students with special needs is quite low and doesn’t enable them to reach their full potential. We can note that education is linked to the future economical standing of a person, so lack of education can perpetuate a cycle of poverty (36). Moreover, there is a lack of visibility for the benefits offered for people with disabilities and the system is too complicated, as suggested by the following data: 67% of people with disabilities say they are either not very familiar with the supports available to them or do not know anything about it (37).

• Then there are other issues that are due to both lack of policy and / or policy enforcement by the state and lack of cooperation with it by businesses and corporations. We can mention the work accommodations and employment issues that people with disabilities face. This is both due to the stigma around having a disability that discourages employers to consider hiring and because of the disability benefits, whose income cutoffs are so low that they incentivize people with disabilities to not work as much as they can, and be active members of the labor force of their country, at the risk of losing their disability benefits (Johanna Lewis, 2022 (38)). Furthermore, it can be noted that employment only represented 4.7% of federal disability spending for the year 2019-2020, whilst income (meaning social security income) represented 89.8% of that same spending (39). Therefore the budget attributed to passive ways of making sure that people with disabilities are surviving and having their basic needs is around 19 times the budget attributed to a more active way of enabling people with disabilities to work for their own wage. 

I am not by any means asserting that people with disabilities should receive less social security: this social security is often not even enough. I am only trying to point out the fact that the government seems to spend a significant amount of money to keep people under the necessary amount of income rather than help them enter the workforce by enforcing the implementation of accommodations, and investing in programs for work inclusion.

This goes to show that for the government of Canada, the inclusion of people with disabilities, in the long term, does not yet seem to be seen as a factor of key importance. This lack of consideration restricts the ability for people with disabilities to function as independent human beings and benefit from the monetary gain of work as well as the social gain of cultivating more independence. However, in regard to the ways of enforcing such policies, the State is very limited since policies cannot change the behaviors of employers who might stigmatize people with disabilities.Policies surrounding the inclusion of people with disabilities are a double-edged sword. On the one hand, they theoretically allow people with disabilities to join the workforce, but on the other hand, it could be said that they reinforce the stigmatization of people with disabilities, as the hired people who happen to have disabilities could be seen as only a way to comply with those regulations and not as capable and skilled workers. (Johanna Lewis, 2022 (40))

• The last category of issues consists of institutional issues that are directly linked to the influence of medicine on the state. For example, criteria to qualify for disability benefits are largely based on the definition of disability in medicine and what medicine considers to be a disability. We can go back to the MCS disease process, which was only recognized as a disability in 2007 by the government. This measure was only adopted after the medical sector began to classify this disease in 1987 and began to standardize the symptoms. That was concluded in the medical sector around 2005 by the proposal of more precise definitions of what an MCS disease is. We can see from the closeness of the time period and the order in which the medical sector and the government classified MCS that the medical sector impacts the government sector. Furthermore, we can note that even now, since the medical sector is not very familiar with this disease, people who have an MCS disability struggle to get a diagnosis and be eligible for disability benefits, and the state doesn’t accommodate them as much as it would for a popular disability that the medical sector knows well. And this power that the medical system has over the state brings us to the second axis. 

In the second axis, we will see that testimonies also tackle social issues that border on stigmatization and medical ableism. 

Wellness culture and people with disabilities: 

To begin this second axis, we will start by addressing the phenomenon of wellness culture. This is defined by an « active » and « ongoing pursuit » of health and improvement in order for the individual to reach their full potential both physically and mentally. This culture draws a clear link between the body and the effort. This is explicited by the statement « Good health [is] synonymous with beauty and self-fulfillment. » (Daniela Blei, 2017 (41)). Therefore, a great body is a proof that shows that its owner is disciplined, whereas a body that is not well functioning has a negative connotation and is something that one should seek to repair or try to improve. This belief obviously puts people with physical disabilities in a delicate situation, since their bodies feature a physical impairment. This wellness culture could be called a movement since it is a conscious effort to encourage the individual to improve themselves. For example, wellness culture is clearly displayed on social media where influencers promote self-care routines and eating habits that can make you feel better and in the most extreme cases, can supposedly cure a disease. All of those teachings can also be found in self-improvement books that those influencers sell. Wellness culture has also stretched to the workplace where corporations encourage the employees to connect in order to reach a higher level of productivity (42). Nowadays, this movement aims to attract individuals from any socio-economic background, as it places significant emphasis on the work that needs to be done and the hope that individuals have to latch onto, rather than the factors that may prevent or facilitate improvement. 

What is interesting to note about wellness culture is that it first appeared to counterbalance the rise of medicine in the nineteenth century, which treats the collective and doesn’t cater to the individual but rather the condition exhibited in the individual. As explained by author and historian Daniel Blei (43), the adepts of this wellness culture, at that time,  were both men and women who belonged to the upper classes of Europe.  

Their common ambition was to avoid sickness through self-discipline and exercise, “The body became a source of autonomy and self-determination, at least for those men and women who had the resources to cultivate it. » (Daniela Blei, 2017 (44)).The wellness culture was characterized by having a much more natural aspect to it than the science that is medicine. Consequently, in the nineteenth century, wellness culture was a sort of alternative medicine. However, as this culture grew more popular, the adepts began to see the ideal body of their time as a goal or ambition that one had to strive for because the individual hoped or believed that if you worked hard enough, this goal would be reached.

Nowadays, the diversification of this culture allowed it to decenter itself from attaining the ideal body, to place at the center of this culture satisfaction in oneself. This means that the individual has to strive to be satisfied with their general situation, meaning they have to cultivate good mental health, they have to be satisfied with their body (and be willing to work on their body to get that particular satisfaction) and feel at ease in the workplace. 

To better understand the following testimony, we will focus on the physical aspect of wellness culture.

In the testimony of Lucia Lorenzia, a PhD holder, she tackles the subject of wellness culture.« I mean the way that wellness culture has crept into health care and has erased disabled folk experiences of not getting better but still having needs and desires and the right to care ». This statement refers to one of the fundamental beliefs of wellness culture, which is the interpretation of the state of the body as a direct result of how its owner treats it. A body with physical impairment is therefore seen as flawed when based on factors that one can impact. Consequently, one can feel the imperative to reduce those impairments whilst hoping that by doing so their situation will improve.So we can see that wellness culture is wrongly assuming that people with disabilities can do enough on their own to conceal their disability when that disability can be seen as “potentially improvable”. In this case, the individual is highly encouraged to try to compensate for their disability and be productive and optimistic in the hope that they will feel better, when their suffering is often brought on by structural issues. The wellness culture, as the name suggests, pushes the individual to be well and looks down upon people who cannot overcome obstacles to reach the highest satisfaction in their body. Any individual that doesn’t engage in this quest for self-improvement can be seen as lazy, and any struggle they bring forward are often dismissed because, as wellness culture implies, they should have tried harder and been more determined in their endeavor. This imperative obviously doesn’t apply to people with disabilities that go beyond their individual control. Indeed, no one would expect a person who has lost both legs to run in order to keep themselves in shape. Structural issues are not seen as issues that we should collectively address and work to suppress. Instead those issues are seen as obstacles that the individual (not the collective) has to overcome in the journey towards improvement. This can be linked to the common misconception around disability and suffering that is also portrayed in wellness culture. 

Indeed, wellness culture tends to overestimate the health attainability of people, even for people with physical disabilities. We can add that this culture puts the responsibility of stopping the « suffering »  on the person with the disability, because the message of wellness culture is that everything wrong can be fixed if one puts the work in it. This provokes an individualization of suffering or lack thereof that is experienced or not by people with disabilities. The suffering is not seen as something collective that is faced by thousands of people with disabilities and that stems from other factors.  This belief triggers a process of delegitimization of the feelings of suffering of people with disabilities. When that discrediting is put into the context of a society that stigmatizes people with disabilities, we can notice that this is another form of disregard that people with disabilities might face: one that doesn’t come from institutions but directly from people, fellow citizens.Although not easily quantifiable, this feeling of “not doing enough” to fit the nation’s narrative can be seen as excluding the disabled population even more. 

Furthermore, the link between disability and suffering is an erroneous one, because the suffering of people with disabilities could be due to all of the issues that we have mentioned in the first axis in addition to social exclusion. Consequently, this suffering is not endemic to disability, it is rather due to the lack of actions or the inefficient actions taken by the government and the stigma that comes with disability in society. As a consequence, it could be said that wellness culture has the collateral effect of undermining the collective or shared experience of people with disabilities, in a clumsy attempt to promote a form of empowerment and emancipation from social and institutional limitations. To further illustrate this idea, as in the Netflix series “Explained – Designer DNA” by Rebecca Cokley, a woman with dwarfism says: “I don’t suffer [from dwarfism] I suffer from how society treats me”. (45)

The misconception of the quality of life of people with disabilities, a pillar of ableism in the medical sector: 

Now we will move onto an interesting testimony that tackles an issue that is deeply rooted in the principles of medicine, which can be a source of suffering for people with disabilities. Heidi Janz is a woman with multiple physical disabilities due to cerebral palsy and she is a professor of disability ethics at the University of Alberta. In her testimony, she says:  « As disability ethicist Joel Reynolds notes, ableism is endemic to medicine.”  Biomedicine aims at curing humans of their diseases and other disabling conditions to make sure that the individual can preserve a good quality of life (46). Furthermore, this science has established a norm by which people with conditions to treat are uncovered. This aspect of medicine has been displayed by George Canguilhem, as explained by Richard Harton in The Journal of The Royal Society of Medicine : “The issue of which human states can be called pathological and which can be called normal is central to modern medicine.”(47) Of course, a body conforming to the norms of medicine would be healthy and free of any impairment. 

 Here we can mention the confusion surrounding quality of life and people with disabilities, in which quality of life is only seen through the Medical Model. According to Ron Amundson, in Disability, Ideology, and Quality of Life: A bias of Medicine (48) :  “The Medical Model, according to which disability is a problem of individuals whose biomedical states disadvantage them. On the Medical Model, disadvantages are natural and inevitable outcomes of simple biomedical issues”

Therefore the belief that one could have a good quality of life with a body that has impairment is not very conceivable by medical standards which explains why a disability is often seen as a deviance (although not voluntarily) since it cannot be cured like a disease would. Through a biomedical lens, having a disability is only seen as negative, since it is thought to decrease the quality of life of an individual. We can note that here, disability is only seen as pathological, and the social aspect of it is not acknowledged, since the capacity of a disability to degrade the quality of life of an individual also depends on the environment in which the individual lives, more precisely if there are accommodations in place or not.  Overall the Medical Model of disability is flawed since it fails to incorporate the social aspect of a disability. This flaw will negatively affect the vision of patients and people with disabilities by healthcare professionals and the interactions that these individuals may have. 

For instance, in her statement, Heidi Janz reflects on the ableism faced in the medical sector and the need for people with disabilities to come “armed” against it.

« As someone who has long been aware of both the prevalence and the perils of medical ableism and as someone whose disabilities include a significant speech impairment, I’ve made it a rule never to go into the ER [Emergency Room] without an aid or friend with me to assist me with communication. This is because the risk of me not being able to make myself understood to clinicians and other healthcare personnel is great and my risk of having an adverse outcome is due to a combination of miscommunication with the medical team and the high probability that the prevalence of medical ableism could result in erroneous judgements being made about my quality of life is even greater. » Her perception of going to the hospital is not positive because, in her case, the hospital isn’t a place where people find cures but rather a place where she has to confront adversity and where her state could be aggravated if she is not taken seriously enough. In the book Foucault and the Government of disabilities,  S.L. Tremain states that in western societies, freedom is greatly emphasized as a fundamental right, and this fundamental right is something that people with disabilities lose in their forced reliance on other people to make sure that their wishes are respected. “The “free” citizen is one who can take charge of himself/herself, that is, act as her/his own command center. When the citizen of neoliberal society is defined in terms of self-mastery, it may not be possible for some disabled people to be truly “free” in these contexts, unless some protectionist (i.e., paternalistic) strategy or ethics of “care” is employed.” (49). This could lead people with disabilities to feel excluded, since they are not seen as “free” on the same basis as people without disabilities. The need to have somebody that does not have disabilities to vouch for them, shows the little consideration that western societies have for people with disabilities, and the little credibility and legitimacy accorded to people with disabilities in issues that primarily include them.

In this testimony from Heidi Janz, we can also detect the implicit mention of medical paternalism which is broader than medical ableism. Medical paternalism is a set of attitudes which gives the physician more legitimacy in relation to the health decision of patients. In this context, whatever decision the physician takes about the health of their patient will be assumed to be the one that best supports the patient’s interest. Here, the patients don’t have a lot of say, because they are perceived as unknowledgeable compared to the physician. (50)

The criticism that medical paternalism faces is mostly centered on the fact that this mode of interaction doesn’t enable the existence of a dialogue between the patient and the physician where both of them work to achieve a better health status for the patient.   

We will now move onto another interesting testimony of Heidi Janz, where she recounts one of her past experiences with healthcare professionals. She says: « one looked at the other and exclaimed incredulously: She’s an R1 [a patient with a certain goal of care] and shook her head. Any ostensible status that I have as an ethics professor or disability rights advocate was instantly stripped away and I became presumptively a non verbal static quadraplegic who already had a feeding tube and complicated pneumonia. It was clear from this nurse’s reaction to my goals of care that she could not imagine my life worth living. » 

In this testimony, we can see that Heidi Janz encountered cold and dismissive medical professionals, who made assumptions about her quality of life. The problem lies in the fact that these assumptions could lead to not listening to the descriptions of pain of Heidi Janz, and not administering the right treatment, or foregoing treatment that could be helpful to the patient.

To better understand why disability is linked to a lesser quality of life, I will refer to the observations of Jeffrey Martin who remarks that there is a “major conundrum when doing health-related quality of life [HRQL] research is that most measures, including a very popular one (i.e., the SF-36), confound health and function.” (Heidi Janz,2019 (51)) We can deduce from his statement that this “conundrum” entices medical professionals to sometimes equate disability with a lesser quality of life when the ability to do actions is not inherently linked to the quality of life of a person, as medicine perpetuates this idea. Even though these assumptions may stem from a will to accomplish medical duties more effectively, sometimes they show themselves to be self-defeating, in the sense that these assumptions do not help people but rather act as obstacles to providing good healthcare to people with disabilities. The philosopher George Canguilhem “asks us to examine the content of a patient’s experience rather than to begin with a biological translation of that experience. If physicians begin by suspending their prevailing scientific ideologies about disease, they are more likely to discover the qualitative intentions of their patients’ symptoms.”  (Journal of the Royal Society of Medicine, Richard Horton, 1995 (52)). Therefore, in the case of disabled patients, if healthcare professionals tried to listen to the patients, without trying to link them to biological facts ahead of time, they might be able to distinguish more clearly the symptoms of diseases or conditions, in the long term, and overall improve the treatment received by patients. Consequently, there seems to be a lack of training from professionals to better adapt diagnosis to patients that present disabilities. Such training would be beneficial in order to address and reduce, in a significant manner, the inequalities between “valid” and “in-valid” patients. 

The authority of medicine:

Other than the misconceptions about the quality of life of people with disabilities, there is also another issue that further minimizes the place given to people with disabilities in conversations about their own health status: the cognitive authority that medicine has in modern society. 

We will see that this authority separates the patient from the discourse about their health by giving the physician power and credibility (because of the knowledge they have about the human body) and this authority also underpins the stigmatization of non-conforming bodies. Firstly, as Susan Wendell defines it in the Rejected Body, cognitive authority is the power to have “one’s descriptions of the world taken seriously, believed, or accepted generally as the truth.” (53) As mentioned earlier, medecine can see the disabled body as defective. As medicine is a science held in high regard, it is no surprise that the belief that having a disability can automatically equate to having a defect is widespread and socially accepted, and has only recently been challenged.  

The medical body has the power to undermine the experiences of people with disabilities while gaining the support of the majority of people. In other words, medicine occupies the mighty position of social regulator. This is especially interesting when we consider the other functions of medicine, as Foucault explained them chronologically in his book History of Medicalization (54): historically, medicine never only had curing sick people as its sole mission. 

Before the second half of the nineteenth century medicine aimed at preserving a healthy population to protect the nation from invaders in case of war. Later, during the rise of urbanization around the end of the eighteenth century, medicine aimed at stopping the spread of infectious diseases in Europe. The advent of hospitals and cemeteries which are places where sick people and dead people who could harm the living were concentrated in specific secluded areas, these historical factors are part of the legacy of urban medicine. Later, with the rise of capitalism, medicine had to ensure that a nation had a healthy and productive workforce to produce enough merchandise and make sure that economic growth was possible. This last function is currently fulfilled by rehabilitative medicine, for instance. In this branch of medicine, healthcare professionals try to diminish the impact of the patient’s condition to make them more productive, as explained by Foucault (55). We can gather from that, considering the current world, rehabilitative medicine aims to improve the quality of life of a patient by enabling them to do more and be more independent, and to, theoretically, be more likely to integrate the workforce after the rehabilitative process than before.

We can note that this idea of productivity is present as well in the wellness culture, and overall it’s an idea that is based both on medicine and on the current state of our world. So we can gather from this, that medicine is impacted by society. In our last part we will see that medicine is also impactful on society through a clear and defined tool, which makes the issues faced by people with disabilities even more intricate. 

The diagnosis: a tool to classify and label medically and socially:

Finally, we will analyze more closely how the vision of medicine is imprinted on the legislation of the government, by citing one particular set of issues faced by people with disabilities which is the need for a diagnosis for access to numerous services such as insurance, social benefits and other essential services. In this last part we will cover one of medicine’s most powerful tools to assert its authority: the diagnosis that later enables the classification. To better understand the authority of medicine, we can simply take a look at the definition and the functions of a diagnosis. 

A diagnosis is defined as the “process of identifying a disease, condition, or injury from its signs and symptoms.” (Anne-Marie Jutel, 2009 (56)). Therefore, a diagnosis is what allows the health care professionals to prescribe the adequate medication, and to name what supports the person is entitled to. So other than its function to help the patient get adequate help, a diagnosis also has administrative power, since it can act as certification or proof that you are eligible for a certain insurance or certain support.

Also, as we have seen earlier, people with MCS disease process and who did not have a diagnosis were not trusted by their relatives. So diagnosis is what from a legal standpoint allows people to be unwell without or with less rebuke, just as explained in The Rejected Body by Susan Wendell (57) because it legitimizes their condition and makes it official from the perspective of the authorities. 

The need for a medical diagnosis acts as a “social label”(58) by implementing a system of “who deserves what support”. This system will have two distinct outcomes: it will disregard people without diagnosis who are suffering and struggling and at the same time enable the ones with diagnosis to receive support and help. To better illustrate, we could allude to the MCS disability: people who have this disability moved, on paper, to the other side of the spectrum, after the recognition of MCS disease process as a disability in 2007. This is because they were no longer subjected to lack of recognition from the medical sector but they were assured in 2007 that they would benefit from the same rights as other people with disabilities, although we have seen in the first part that this recognition has yet to be transformed into active measures taken by the State to accommodate people with MCS disability.

Nevertheless, the fact that a lack of a diagnosis could stop one from getting help is especially problematic, seeing that a diagnosis is based on knowledge of the disease and methods available and known to uncover it, at only a specific point in time. This is why Susan Wendell in The Rejected Body, writes that « “social need should not have to be screened through the filter of medical values and authority »(Sherwin 1992,194) This is a fundamental insight that many disability activists would cheer. If we were willing to assess realistically what each person needs to participate as fully as possible in the major activities of our societies, medical classifications would have far less social importance than they have now. »(59). This belief could resolve the problems faced around access to support. But the limitations of this statement are quite obvious: imitating or forging a new disabling condition would be extremely easy. Therefore, the power given to a diagnosis is significant, because on the one hand, receiving this diagnosis, even if it is one of a truly harsh condition, validates the struggles of the individual. On the other hand, the lack of diagnosis, despite the complaints of the individual, can ostracize them and prevent them from receiving support. 

To better assess the power of medicine, one could also mention the inclination of medicine to objectify the body of the individual and alienate the person from it to better exercise power over it. Firstly, we will see that medicine, as presented above, fits the definition of “subjecting power” by Foucault which is “a form of power […] which categorizes the individual […] [and] attaches him to his own identity, imposes a law of truth on him which he must recognize and which others must recognize in him. It is a form of power which makes individuals subjects” (60) . The classification of people’s conditions and the diagnoses  are ways to categorize people that share the same particularities, this process strips a person from the rest of their identity, and confines them into a box limited to one singular part of their being and identity: their body.

This can already be very distressing to a patient, but what’s more is that restricting the person to only someone with an “abnormal” component (a disability), will limit their legitimacy in talking about how they perceive their bodies, and it will lead to numerous assumptions made by healthcare professionals over their lives and needs, while ignoring the account that the patient can make of their own situation.

Summary: 

In summary, the testimonies surrounding the legalization of MAID (Medical Assistance In Dying) are not solely focused on the question of life or death. It is more so based around the numerous issues, such as institutional ones, or the ones created by the stigma around having a disability, and the issues created and perpetuated by the influence of medicine. We may also add that our current climate, which praises productivity, is also harmful towards people with disabilities since it tends to exclude people with disabilities and condones a certain vision of what it is like to have a disability, which is both untrue and depreciatory. The different panelists that we have seen all agree that there is structural coercion at play since these issues hinder the quality of life of people and could, in the worst cases, push people over the edge. 

Overall, the issues that this research paper has tried to bring forward are complex and as their categorization suggests, there are many factors that are responsible for them which harden the process of addressing all of them. Although, the issues that are caused by the state’s legislation (first category) seem to be more likely to be resolved, and one could suppose that this improvement in the legislation may have a positive effect on the perception of people with disabilities. However, seeing the power of medicine over legislation, it would be quite difficult without a decline of ableism and without changes to the medical vision of the body. 

Finally, the multiplicity of these issues shows that the passing of Bill C-7, which allowed people with disabilities to use euthanasia even if their death was not foreseeable, could be symptomatic of a much larger and more intricate problem in the government, and in Canadian society. This intricate problem  is often referred to by the words “structural coercion to use euthanasia”.  In the testimonies, and through the analysis of the testimonies we have come to find that this intricate problem could be constituted by the sort of neglect from the State combined with the stigmatization and ableism that Canadians with disabilities have to face.

Sources: 

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The testimonies of Lucia Lorenzi, and Heidi Janz come from a video made by the Disability Filibuster entitled April 24, 2022-Disability Filibuster – Medical Ableism.

The testimonies of the president of EHAQ Rohini Peris, and of Kate Williams come from a video made by the Disability Filibuster entitled June 24- Disability and poverty-Disability Filibuster 2022.

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