Not Your Bogeyman

By Derek Newman-Stille

I don’t know if others had this experience, but during high school, we had assemblies where disabled people would come in to give us “inspirational” and “cautionary” talks. The school would always invite people who had acquired their disability through accident and injury.

They would come into the school, come on stage in our assembly room and say “kids, don’t end up like me” and then they would start a tale of how they were being silly and taking risks they shouldn’t have and became disabled as a result. They would tell us about diving into a shallow pool or driving while drunk… and becoming disabled as a result. The message was supposed to be “be safe… or you’ll be disabled”… The “be disabled” part was the implied threat. Somehow we were supposed to view disability as the largest tragedy that could happen to us. Disability was portrayed as the Bogeyman to get us to do what we were told.

Disability was portrayed as the fate worse than death. It was portrayed as the ultimate punishment, the Bogeyman, for taking risks. These seminars suggested that disability was the worst fate that could befall anyone… and more than that, that disability was generally CAUSED by people taking risks, by being careless. For weeks afterward, people would ask the disabled kids at school “what did you do to become like that”… People still stop me on the street to ask the same question. Complete strangers ask it. And I know that my experience is not unique. Disabled people are constantly asked by strangers “how did you become disabled”. We all know what the question is really asking – it’s asking “can you please tell me that you did something wrong to become disabled because I don’t want to be like you” or “can you please let me know that you are justly being ‘punished’ by your disability”. They want to see blame. They want to believe that disability is a punishment and that it can’t happen to them. They do it to distance themselves from disability.

Disability has been constructed as a punishment in so much of our media. Our society wants to blame disabled people for being disabled.

Now, imagine being the disabled kid in the audience hearing someone say “now, don’t take risks or you will turn out like me”. Imagine hearing disability talked about as a punishment. Imagine watching the horror cross the faces of all of the other students as they consider that they could become disabled instead of dead from their actions. Once again, we hear that being dead is better than being disabled.

At the same time as these assemblies were taking place in school, we were bombarded with “play safe” videos featuring people becoming disabled because of taking risks. For example, the War Amps played this commercial of a robot, Astar from Planet Danger, who in the commercial had his arms and legs cut off. At the end of the commercial were the words “I can put my arm back on, you can’t, so play safe”. Disability was the spectre of horror that was presented to us.

Disability has been constructed as a fate worse than death, as something to be afraid of. Disability has been constructed as horror.

As a disabled person, and one who is immunocompromised, I am concerned about COVID. I am worried that if I contract it, I won’t survive it. I am worried that if I contract COVID, I will have life saving equipment withheld from me to instead give it to an abled person because too many hospitals have policies that suggest that those with “existing conditions” are to be de-prioritized and their equipment is to be given to abled people because “they have a better chance of surviving” or “they have a likelihood for a better quality of life”. However, I am once again seeing the rhetoric of disability as the Bogeyman being deployed by health care agencies, by the news, and by people who consider themselves liberal. People are now saying, even if you don’t die of COVID, you will likely become disabled. Once again, disability is considered the fate worth than death. Articles are warning that people came in with COVID and left with permanent disability. Articles are even warning that because of COVID, there are likely to be increased taxes because of more people needing disability supports.

People should be encouraged to be cautious about COVID. People should be encouraged to wear masks if able. People should be encouraged to socially distanced…. BUT disability should not be used as the worst possible outcome of COVID. Disability should not be used as a Bogeyman to scare people into compliance. I am tired of seeing my body used as a threat, my life used as an example of the worst case scenario, my life used as an example of what could go wrong. Disability should not be constantly equated with tragedy and horror. Disability shouldn’t be the thing to inspire fear.

Editorial by Derek Newman-Stille, MA, PhD ABD (They/Them)

The Problem of “Burden”

By Derek Newman-Stille

For anyone, being called a “burden” is painful. It suggests that that person doesn’t contribute anything, that they are a drain on resources, and fundamentally that they don’t matter… worse than don’t matter, it suggests that they actually make things worse for those around them.

The word “burden” causes extra pain for disabled people. It is a word that we hear often in reference to disability. We are actively told that we are a social burden, an economic burden, a burden to our friends and family. We are told that living with a disability is a burden. We are told that the people who kill disabled people – “angel of mercy” medical practitioners and family members who kill their disabled family members are doing so because they can’t handle the burden. When people want to adopt a disabled child or when they are going to birth a disabled child, people ask them if they are prepared for the burden it will represent. We live in the cage of “burden”. The word forms bars around us, shaping everything we encounter in our world.

The word stays with us. It sinks into our flesh, deep into the core of us. It becomes part of us… and on some level… many of us partially believe it. We internalize it, just like we internalize so much ableism. The bitter taste of the word shapes how we enter into the world.

I can’t count the number of times I’ve been called a burden. Whether generally from social texts like newspapers and even the WHO (World Health Organization), or even by friends and family. And every time, it tells me that I am not only perceived as not worth anything, but am actively perceived as a deficit, as a drain, as something negative. Sometimes people use synonyms, telling me that I am a “frustration” or that my needs are “just too much”, or that “maybe this job will be too much of a strain on your health”. Sometimes I’m told that I’m an impediment – literally that I am in the way, an obstruction, a wall.

What does it mean when you call a disabled person a burden? It means that you invalidate everything that they are. It’s a form of violence. It reinforces the narrative that we aren’t worth anything. It’s a word with heaviness affiliated with us, a weighted word, and one that we constantly have to carry with us.

“Burden” is the inaccessible house that you’ve built around us. We can’t get out of it, and you blame us for not being able to. You tell us that “things would be better if you had a more positive attitude”, you tell us “stop bringing everyone down”. You tell us that even voicing our frustration about this violence is “too much and unfair”. We aren’t even allowed to speak back when you tell us that we are a burden because that, too, is perceived as placing a burden on you.

“Burden” is a word with history – personal and political. It does harm to the disabled community whenever it is uttered.

Editorial by Derek Newman-Stille, MA PhD ABD (They/Them)

Canada Needs A Disability Pride Month

By Derek Newman-Stille

In a severely ableist society, finding pride in disability is difficult. We are constantly being told that we don’t belong, that we are a drain on the system, that we are a problem. We live in an inaccessible world.

An act of pride is a powerful assertion that we belong, and, more than belong, that we matter and that we should take joy in our disabled bodies.

Although the United States has a Disability Pride month in July, Canada doesn’t have a Disability Pride month and I think that we need one. We need to have an assertion of Pride in our accomplishments. We need to celebrate disabled history. We need to celebrate disabled futures. We need to celebrate DisArts and De’VIA (Deaf art). Pride can be an act of transformation and remaking the world.

LGBTQ2IA Pride has been an act of powerful visibility over the years – an affirmation and an expression of equality and open opposition to shame. Pride is an act of resistance to the self loathing that society tries to apply to us.

Having a Disability Pride Month would be a powerful way of building on the visibility of Disabled people and our rights. The visible presence of disabled people is an act of defying the attempt to make us invisible, to try to de-voice us and disempower us. As disabled people, we can use a Pride Month to showcase our disabled arts, culture, and the power of our disabled presence.

Although most LGBTQ2IA Pride events tend to revolve around marches and often take place in inaccessible places, a Disabled Pride Month can push beyond the idea that we need to “march”, because that act is itself ableist and exclusionary. We can find new methods of celebrating our identities as disabled people in ways that acknowledge the need for accessibility. As disabled people, we have always had to be creative about making spaces for our accessibility. We’ve always had to find new ways to find our way in the world. So, Disability Pride Month could be a way to showcase the possibilities of an accessible celebration and an accessible assertion of Pride. Pride doesn’t have to be a parade. It can be multiple celebrations that include our bodily diversity.

So, Canada… how can we start showing our Disability Pride?

Editorial by Derek Newman-Stille, MA, PhD ABD (They/Them)

We Need to Talk About Police “Wellness Checks” and the Violence They Do to Disabled People in Crisis

By Derek Newman-Stille

Content warning for discussions of police violence and the murder of disabled people and BIPOC people

Police are being sent to do “wellness checks” on people who are reported by friends and family to be in a mental health crisis. Most people call 911 when someone they know is believed to be having a mental health crisis… but increasingly, media is illustrating something that many of us in the disabled community have known for years – police are the ones doing these “wellness checks” and all too often, these “wellness checks” are resulting in violence toward and the murder of the people who the police are supposed to be checking on.

On May 26, 2020, during a “wellness check” by Nanaimo BC RCMP officers, Shanna Blanchard was beaten by police and left with a broken nose, bruised ribs, and damaged teeth. She was placed in a “spit hood”, which is used to keep incarcerated people from spitting, but this was placed in such a way that she couldn’t breathe. According to CTV news, she repeatedly told the officer that she couldn’t breathe and the officer responded “If you’re speaking, you’re breathing.’

According to CBC News, Blanchard’s son called 911 when Blanchard was in the bathroom crying due to her continual experience of depression. She states to CBC news “I’ve been struggling with depression through COVID. I lay on the floor and cried and cried and cried – I was really upset”. Blanchard’s son did what most people do when someone is in crisis… and it’s something we are constantly told to do. When in crisis, we are told that we should call 911. We expect help from professionals when we call 911… we don’t expect the police to come and beat up or murder the person they are supposed to be checking on. Yet, this happens regularly and its only now getting attention.

CBC News points out that Blanchard “is now speaking out about her story a month later because she thinks police should not be the people responding to calls for mental health and wellness checks”. She told CBC news that she was already fearful of police before the event and when she heard male officers outside her bathroom, she told them that she would come out if the paramedics were called instead. She told CBC news that after officers convinced her to exit, they punched her in the face and later that her face struck a bannister while police were dragging her down the stairs.

Earlier this week, a video surfaced showing an RCMP officer dragging nursing student Mona Wang and stepping on her head during a “wellness check”. CBC news reports that the officer said that “only necessary force was used to subdue the student”. Even if Wang was a danger to herself or others, there are ways of subduing someone through nonviolent holds. I can’t imagine anything that can excuse someone stepping on someone’s face. According to CBC news, Wang reported being unable to stand up when officer Browning demanded she stand up and Browning then repeatedly assaulted her and stood on her arm, and kicked her in the stomach while she was semi-conscious. The officer then reportedly dragged Wang into the hallway in handcuffs and dragged her down the hallway while punching her in the face. The legal response to this in support of officer Browning states “the limited use of force by the defendant Browning was no more than was reasonable and necessary in the circumstances to both direct compliance as well as protect the plaintiff from further harm”. It is difficult to imagine that this situation was considered “limited use of force” and raises questions about what is considered a “normal” use of force in situations where police are dealing with people in mental health crises.

I want to especially bring attention to the word “compliance” in officer Browning’s statement of defence. This word is frequently used around areas of police violence. Often in cases where police violence occurs, the officer will comment on the lack of “compliance” from the public that they are encountering. This points out that much of the violence happening is because people are not immediately doing what they are told by the police. There is an assumption here that the act of saying “no” or being unable to do what they are told is viewed as a hostile act by police.

I want to also point out that these acts of violence during “wellness checks” have also resulted in the deaths of at least 4 people in Canada since April, as noted by CBC News Nova Scotia . Chantel Moore was fatally shot by police during a wellness check in early June. She was a 26 year old woman from the Tla-o-qui-aht First nation in British Columbia. According to CBC News New Brunswick, the officer involved claimed that he shot moore because she allegedly had a knife. They point out that a former boyfriend of Chantel Moore’s called in for a wellness check on her because she was being harassed. She was already in a situation of experiencing violence in the form of harassment and police were called to help her cope with that, but this resulted in her murder. It’s incredibly concerning that she was killed during an act that was supposed to bring her support and help.

Regis Korchinski-Paquet, a 29 year old living in Toronto, also died during an encounter with the police during a “wellness check”. CBC News Toronto points out that Korchinski-Paquet has been experiencing seizures for the past 5 years and has been requiring occasional help from the police during that time. During a wellness check by the police, Korchinski-Paquet fell from her 24th floor apartment building. A special investigations unit is currently examining the circumstances around her fall and the lawyer from the family has indicated that the process so far “limits transparency” according to CBC News Toronto.

D’Andre Campbell, a 26 year old black man with schizophrenia, was shot by police on April 6 in Brampton after having called the Peel Regional Police for help. This is a case where he actively reached out for assistance and the result was his death. As of June 11, 2020, CBC News Toronto reported that the officer who shot D’Andre Campbell refused to provide an interview or turn over his notes to investigators in the case. According the the article, the officer “cannot be legally compelled to present themselves for an interview to the SIU”. This is a concerning policy and illustrates the protection that is afforded to police officers that is not afforded to the people who are shot by them.

D’Andre Campbell’s sister Shenika Malcolm reported to CBC News Toronto “He called out for help, and the system that was supposed to help him failed him. There was no imminent threat… and no de-escalation methods”. During the encounter, a taser was used by two officers and one officer shot D’Andre multiple times.

I want to highlight here that many of the people being killed during “wellness checks” are BIPOC (black, indigenous, people of colour) people. There is a history of racism in this country that also intertwines with ableism and BIPOC people who manage mental health are often victims of violence from police, medical authorities, and the general public. Indeed CBC New Brunswick points out that “black and indigenous people are overwhelmingly over-represented in fatal encounters with police.”

Police are not trained to deal with mental health crises. They are trained to think of the people they are interacting with as a threat. They aren’t equipped to deal with mental health or disability and too often, these incidents of violence occur when a person is already in crisis.

These situations also highlight a dangerous ableism amongst the police community and it is something that needs to be examined. These are cases where people are in need of help and either they or their families are reaching out for police support, and yet the results are either fatal or extremely violent for the person who is already in crisis. Police should not be involved in “wellness checks” and these recent deaths and acts of violence highlight that fact.

This system of police involvement in “wellness checks” needs to be critically examined and questioned. Disabled and BIPOC lives are at risk and we need to examine the way that systemic ableism and racism is involved in these acts of violence.

Editorial by Derek Newman-Stille, MA, PhD ABD (they/them)

Being Told ONLY Disabled People and Ageing People Will Die From COVID and the Visibility of Eugenics

By Derek Newman-Stille

Early in the COVID-19 outbreak, most of the rhetoric going around was that COVID-19 was only really affecting disabled people and ageing people. This demonstrated very early on that disabled people and ageing people were viewed as expendable and were viewed as less worthy of life. We were perceived as people who were expendable.

We disabled people are constantly treated as expendable bodies and as worth less than the abled population. We are constantly told that our existence is a strain on the economic system. We are written off by an ableist society as a burden. It therefore isn’t a surprise that people were commenting that “Only” disabled people and ageing people were dying of COVID-19 and therefore that it wasn’t a disease to take extra precautions about.

As COVID continues, we still encounter the rhetoric of “only” disabled people and ageing people are dying of disease. As people protest being required to wear masks, refuse to social distance and refuse to respect space in stores, they demonstrate a complete lack of care for the vulnerable population. When we point out this fact, often the response is “this isn’t my issue. If you are vulnerable, you should stay in your home”. This grossly neglects the fact that most disabled people live in poverty and simple things like getting groceries delivered are often out of the price range of many disabled people. Disabled people are already isolating – our abled society makes accessible spaces rare and contributes to our isolation. Yet, the expectation is once again that we will isolate – that public spaces are NOT our spaces.

On twitter, @fondfaun states “wearing a mask in public, even if you yourself are at low risk of severe covid, is an act of community love & care! a simple practice of disability justice, expressing that public space belongs to sick, disabled & otherwise vulnerable people as much as anyone”. This tweet powerfully associates the simple act of wearing a mask (something that is of low levels of inconvenience for most people) is a simple act of disability justice and a way to demonstrate disabled belonging… and yet it points out that the majority of people are still not willing to engage in this simple act of disability justice

Indeed, people are actively suggesting in response to tweets like this calling for disability justice that disabled people should stay home and that we don’t belong in public spaces. Twitter user @captaincanucklives tweets about wearing masks in public “Nope. If people are afraid to go out and worried about a virus they should stay home and make other kind of arrangements. I will wear a mask in the hospital. Clinic. Old age home. And to any of my friends that have a compromised immune system”. This sort of rhetoric reinforces the idea that disability is perceived as not a public issue and instead that it is the responsibility of disabled people to survive despite abled actions. Indeed, it reiterates the idea that public spaces are spaces for abled people and that disabled people’s only places are homes, hospitals, clinics, and old age homes. Geographies of disability are presumed to be non-public and access to public spaces is presumed to only be available to abled people.

Moreover, we are now observing people say that our society needs to pay attention because COVID has been proven to affect the “young and healthy”. It is interesting that the rhetoric is being used that people should become cognizant of COVID-19 only because it has been proven to impact everyone. The focus on the idea of having to make people be cognizant of others only because it affects younger, healthier people illustrates an awareness that people will only care about an issue if it affects abled people.

There are multiple issues related to this de-prioritizing of disabled lives. Because of the devaluing of disabled and ageing people, over the course of the COVID pandemic, there have been issues in long term care homes involving unsafe conditions that have allowed for unnecessary deaths. Furthermore, health authorities have stated that they wanted to put in place policies prioritizing access to life-saving equipment for abled people over disabled people. We have also witnessed the Canadian government offer CERB (Canadian Emergency Response Benefit) benefits at what they consider to be the lowest amount possible per month to live off of $2000 while simultaneously Ontario is still offering less than half of this amount per month for people on ODSP (Ontario Disability Support Programme), sending a clear message that disabled people aren’t even worth enough to survive.

Michael Prince points out that COVID disability benefits continue to lack and continue to be treated as non-essential: “Where are the COVID disability benefits? Sleight of hand and twist of fate, parliamentarians make ppl with disabilities wait”

Sarah Colero points out that even though CERB continues to be renewed, disabled Canadians are not getting access to emergency supports when she says in a tweet “CERB is renewed for 2mth to ensure no abled person falls into poverty. Thats 6mth of CERB. Meanwhile disabled Canadians have received no emergency support in this crisis, even though we are disproportionately impacted by this crisis”

Disabled Canadians and disability activists in Canada are aware of the disparity between the supports given to abled people and the supports provided to our disabled community. The Canadian and provincial governments have given a clear message that they are not willing to give disabled Canadians survivable income.

During the COVID pandemic, we are receiving clear messages that our lives are being viewed as of less worth than public access to a haircut. Simple precautions like wearing a mask or wearing gloves are viewed as too much of an inconvenience. We are once again receiving a message that our lives are not worth abled inconvenience.

An Editorial by Derek Newman-Stille, MA, PhD ABD

Being Told Accommodation is Not Possible… Until COVID

By Derek Newman-Stille

For many of us who are disabled, we have been told that accommodations for our disabilities would not be possible or feasible. We have been told that we couldn’t use technologies like Zoom, Skype, or Messenger to do our work remotely. We have been told that we couldn’t access conferences by remote technology. We have been told that we couldn’t attend workshops and creative community opportunities because the locations were not accessible and they would not be able to provide remote access.

So, imagine how we, as disabled people, feel now that all of these accommodations have been made in light of COVID-19. What is the difference between the impossibility of access before and the new “we want to make it visible that our company/workshop/conference/university/government job is accessible”? It’s a matter of which populations were affected. When it was only disabled people who were requesting access, these requests were denied. Now that the abled population is in need of accessibility too, not only are they immediately given access through remote technologies, businesses, universities, and governments are investing money into those technologies, providing workshops on how to use those technologies, and actively ADVERTISING that they are using these technologies to seem more cutting edge than other companies. Why is it that things that were “not possible” when disabled people asked for them are now not only abundantly possible, but also have money being thrown at them to make sure that they are the most accessible? The answer is ableism. When it is just disabled people, our needs are treated as an inconvenience. When abled people also need those points of access, they suddenly become a priority.

From personal experience, I have encountered this again and again with past jobs, with academic conferences (even some that highlight disability), and with writing conventions and workshops. I have been told that the accommodations I have requested would not be possible. I have been told that in-person presentations are essential to conferences… and those same conferences have now moved to an entirely online format. I have been told that no accommodations could be made at writing workshops and retreats (which are physically inaccessible)…. and those workshops and retreats are now online.

When I was being denied accommodations that were necessary for me to be able to participate, I knew that this was largely due to ableism. Early on, I tried to share technologies that would allow myself and other disabled people to participate and was told that these technologies would “complicate things”. I was aware that no one wanted to put the effort into making a space actually accessible. I was aware that they didn’t think it would be a loss to have disabled people unable to attend.

However, it still hurts to know that as soon as abled people are in need of accommodation — as soon as access is seen as not ‘just a disabled person issue’ — immediately companies, conferences, conventions, etc. invest resources into learning how to accommodate people and provide finances to achieve that accommodation. Moreover, the frustrating thing is that many of these accommodations had never actually involved cost on the part of these organizations. They were cost neutral and could be provided by free services like Skype.

This lack of accommodation is certainly not something new or unique, it is part of systemic ableism and part of a devaluing of disabled knowledge, experience, and personhood. Abled society tends to immediately think of disability and accommodation as an “inconvenience”. It is built into everyday rhetoric. We, as disabled people, have to constantly negotiate being viewed as inconvenient, frustrating, as impediments, and have our concerns viewed as frivolous.

Many of us are now asking what happens next. As many abled people are looking for a return to normal, many of us are seeing an opportunity for change, an opportunity for abled people to learn about the needs for accommodation and learn that workplaces should be flexible to provide for multiple needs and multiple forms of access.

Alice Wong talks about the fact that “the pandemic has brought about changes to accessibility for things that disabled people have been advocating for forever” in her Esquire article ‘Normal’ Was Actually Not Great for a Lot of People . She highlights writing opportunities that have been unavailable to her because she was told “you can’t do that. It’s too hard” and “there are too many issues” for her to access these spaces by Skype. Wong tells readers “My hope for coming out of this pandemic is that we don’t return to the status quo. Many people don’t realize that ‘normal’ was actually not great for a lot of people.”

Dorothy Palmer points out that as COVID-19 restrictions are being removed, so are many of our accessibility features and that disabled people are getting attacked for asking for a continuance of access when she states “Disabled writers in the US and CanLit are getting attacked for simply wanting to keep the same accessibility abled people had during the pandemic” in a tweet on June 12.

So how do we maintain access after COVID-19? How do we ensure that people can gain access to events and work places and accommodations in general when it goes back to being “just a disabled problem”? What can we do to make sure that things DON’T return to normal?

…Because normal was already exclusionary.

…Normal has ALWAYS been exclusionary.

Editorial by Derek Newman-Stille, MA, PhD ABD

Characteristics of Disability/ Symptoms of COVID

By Derek Newman-Stille

One of the challenges of being someone who has a disability and chronic illness is that many of the characteristics of our disabilities may overlap with the warnings that we are receiving about signs of COVID. Many of us manage these symptoms daily and it becomes difficult to differentiate between every day symptoms and new symptoms associated with COVID.

I am currently participating in an online research questionnaire that provides me with questions each day about how I am surviving COVID and each day, it asks me if I have experienced: “Dry Cough, fever, shortness of breath, and muscle aches and pains”. These are characteristics that I experience every day and that are part of my life as a disabled person, yet the questionnaire inquires why I haven’t had a COVID test.

Many of my friends in the disabled community are experiencing similar issues, often being tested for COVID when they go to a doctor’s appointment because even when we say that these are aspects of our everyday life, they are often treated as extraordinary. So our concerns are often ignored because medical practitioners focus on the possibility that we might have COVID even when the reasons why we went to an appointment are not due to COVID.

The similarity of COVID symptoms to some of our experiences as disabled people or chronically ill people came up early on Disabled Twitter as a concern amongst us, with people asking how we are supposed to distinguish our every day experiences from COVID. For example, activist Imani Barbarin states in a tweet from March 12 “I don’t think you understand the level of fear disabled and chronically ill people have right now. Not only are you making us sound expendable, but the symptoms of the virus are things we experience on a normal day. Aches, pains, chills…” Similarly, Twitter user @dropoutninja tells us on March 12, “I always have the symptoms. ‘hmm. Is this headache my blood pressure or Imminent Death?’ ‘Is this stomach issue my regular irregularity or the Plague?’ ‘I can’t breathe. But is this a NEW KIND of not breathing?’ For some, the symptoms are red flags. For me, they are Tuesday”

Because so many of the symptoms of COVID that have been listed are representative of our everyday life as disabled people, it is difficult for many of us to discern if we should be worried about infection OR if this is just another day of disabled life. This has a toll on disabled people, leaving us with a nascent worry that we are infected without knowing…. or if we get tested that we are putting too much strain on the already limited tests available for the population. As Twitter user @la_kimitsu says on March 12, “Let’s all play, do I have CoVid-19 or my normal illness/es? For the next 3 to 7 months. Sounds really psychologically healthy. (I don’t see that we have a choice though)”

As disabled people, many of us are already experiencing stress about COVID because of our increased vulnerability and because of systemic ableism that has already allowed some countries/hospitals/care homes/provinces to put in place policies that privilege able-bodied people over us when it comes to access to life saving equipment (which I will talk about in another post), we also live with the personal and persistent worry that we may be infected without knowing it because for some of us, our disabilities already present with characteristics of COVID-19.

An Editorial by Derek Newman-Stille, MA, PhD ABD

The Right to Say “No” Versus Denial of Service for Disabled People

By Derek Newman-Stille

The medical model of disability presents disabled bodies are things that are broken and in need of being fixed by a medical professional. Our bodies are presented within the medical model as incomplete and flawed and our knowledge and experience of our bodies is treated as irrelevant information. This poses a considerable issue with disabled access to medical practitioners. Many of us have disabilities that require constant contact with doctors. This puts us completely under the control of that doctor and subject to their assumptions about our bodies, which are largely shaped by the medical model.

Doctors regularly give up on disabled patients, especially when we have long term conditions that cannot be “fixed”, but are persistent. This happens so often that we have a term for it – “patient abandonment”. Patient abandonment generally refers to the process by which doctors terminate their work with a patient. However, it can also refer to denial of service.

Disabled people frequently face the threat of withdrawal of care if they are “non-compliant”, which is a lose definition applied to situations where we say “no. That is not in the best interests of my health”. Various patient rights organizations have expressed the need for firm policies around patient rights to access to care. The Patient Bill of Rights Ontario states:

“Every resident of Ontario has the following rights:

1. The right to receive all necessary health care services in a health care system that,

i. is accessible, universal, comprehensive and publicly administered and funded,

ii. offers freedom of choice,

iii. provides timely treatment,

iv. does not allow personal income to determine access to health care services, and

v. recognizes that every provider of health care services is a valued member of a multidisciplinary health care team.

2. The right to give or refuse consent to the provision of health care services.

3. The right to all information necessary to make fully informed health care choices, including information about who will provide particular services and about the qualifications of those providers.

4. The right to receive publicly funded health care of high quality in the home and in the community as well as in health care facilities.

5. The right to receive information, whether in a health care facility or in the community, about choices that promote good health and measures that prevent illness and accident.

6. The right to be dealt with by health care service providers,

i. with courtesy and respect,

ii. in a manner that recognizes individual dignity and privacy and promotes individual autonomy,

iii. in a manner that recognizes and responds to individual needs and preferences, including those based on ethnic, spiritual, linguistic, familial and cultural factors,

iv. without mental, physical, sexual or financial abuse.

7. The right to participate in any assessment of personal care requirements and in the development of plans for care.

8. The right to make complaints, raise concerns and recommend changes without fear of interference, coercion, discrimination or reprisal.

9. The right to be informed of,

i. the laws, rules and policies affecting providers of health care services, and

ii. the procedures for initiating complaints about providers of health care services.

10. The right to confidentiality of health care records in accordance with the law.” (

And yet these rights are regularly violated by medical practitioners working with disabled people.

I want to give a personal auto-ethnographic example about my experiences with my own doctor. I was initially excited to work with this doctor because she does work around the LGBTQ2IA community. But during our first meeting, I mentioned that I am a disability advocate and was organizing a talk around health and LGBTQ2IA identities. She replied “No. You disabled advocates constantly demonize doctors. Why would I want to experience that”. I tried to explain that this was not the case, and that I was hoping to open an important dialogue around LGBTQ2IA and Disability. Following this, I was subject to hostility during each of my encounters. A lot of this hostility centred around the doctor telling me that my disability is either in my head or due to my diabetes. My disability is spinal, so I started bringing my MRIs with me to appointments to show them to the doctor each time.

However, I went in to the doctor’s office in early March of this year and met with one of the nurses on her team. I disclosed to the nurse that I had attempted suicide and wanted assistance changing my medications. The nurse noted her concerns when she saw cuts up and down my arms and sent a message to the doctor to say that my suicidality was a concern and that we should have a conversation about my medication. The doctor told her that the suicidality was likely due to my blood sugars (I am diabetic) and then said that she wouldn’t reassess my medications until I got a blood sugar test. I wear an implant to assess my blood sugar and check it multiple times per day. The nurse sent another message to the doctor informing her of this and she replied that there was nothing I could do without a blood sugar test and to just send me away with a blood sugar test form.

Blood sugar is not a primary factor in suicidal ideation and I am also on antidepressants and an anticonvulsant. These were not reassessed.

This occurred just before COVID-19 and when I tried to make another appointment to talk to my doctor about mental health resources and to ask about changing my medications, I was denied access. I was told at that time that I could not access my doctor because I didn’t have a completed blood sugar test. I informed the clinic that I am immunocompromised and did not feel safe going to the blood clinic (a space that is the size of an average livingroom and would not allow 2 meters of distancing). I raised this concern and was told “We can’t help you unless you get blood sugar tests” and told me that I should not worry about COVID. I reitterated that I am immunocompromised and mentioned that blood sugar and suicidality do not correlate and mentioned that my medication for depression, anxiety, and convulsions was probably a concern. I was repeatedly denied service, so I went directly to my pharmacist who was able to give me support and advice about my medication.

I decided that I wouldn’t be able to get any help from my doctor, who made it clear that she was not engaging with the seriousness of my disability and mental health issues.

I chalked this up to a poor attitude about mental health and kept telling myself “but she is one of the few doctors in town who really works with and supports LGBTQ2IA patients.

In early April, I began to have signs of a sinus infection. When I called the doctor, I was again told that I could not get access to the doctor without a completed blood sugar test at the blood clinic. I once again told the receptionist that I am immunocompromised and do not want to risk catching and spreading COVID-19. She told me that I was a “noncompliant patient” and that I could not get access to the doctor. I explained that a sinus infection in no way relates to blood sugar and was consistently getting worse. I was told “we are a team here and you have to follow the rules and be a team player and do what we tell you if you want to talk to your doctor.” I mentioned again that I test my blood sugar at home and had hourly data since January if that was needed. She said that she would contact the doctor.

A week and a half passed and I started calling again. Each time, I was told that I was noncompliant and that noncompliant people don’t get to see the doctor. (Note: I was asking for a virtual appointment because I am immunocompromised and wasn’t able to go into the office physically, but the office provides virtual appointments).

I am sharing my experiences here because I know that I am not alone in being denied care. This is a systemic issue and ties into ideas fo medical authority and medicalized power. Our medical system tells doctors that they are all knowing and that they have more knowledge of their patients’ bodies than we do. This feeling of expertise means that many doctors feel threatened when we say “no” and then use denial of medical service as a punishment.

Finally called with information on patient rights and informed them that what they were doing was a violation of my right of access to health care and also a violation of my right to say “no” to a procedure that could endanger my health (by exposing me to COVID-19). I explained that I would not contribute to the issues around COVID-19’s spread and that I also didn’t want to overload an already taxed medical system by taking time and care away from those that need it for urgent issues related to the virus. I was told that I was noncompliant and that they wouldn’t respond until I had a completed blood sugar test. I want to reiterate that a sinus infection and blood sugar are unrelated, so this demand was not being done for my health or safety.

We need access to better supports as disabled patients. We need to be able to have support to say “no” and to get access to medical practitioners when we need them.

It is time for us to have clear and reinforceable guidelines around access to care and to prevent situations of medicalized authority and the denial of patient care.

In my case, I was able to access a pharmacist who assisted me with changing my medication so that I didn’t continue suicidal attempts, but I am also in a privileged position of being confident to contact my pharmacist and find ways of working around the denial of care. Other suicidal people and people in mental health crisis may not have the same access and may not feel able to contact other medical practitioners after being denied care relating to their suicide attempts, so I worry about the results of denial of care for other people in my situation.

An Interview with Fran Odette

An Interview with Professor Fran Odette, George Brown College

By Derek Newman-Stille

Q: To start off our interview, could you tell readers a bit about yourself?

Fran Odette: Wow, this is always a challenging question but here goes…I am a professor at George Brown College, in the Assaulted Women and Children’s Advocate Program as well as in the Social Service Worker Program. I identify as a queer, cis-gender female, settler and I have multiple disability experiences. I am a wheelchair user and am also hard of hearing, so I use hearing aids.

Q: Could you tell us a little bit about your relationship to disability?

Fran Odette: I was born with a genetic condition called Osteogenesis Imperfecta, Latin for ‘imperfect bone development’. It was hoped when I was young that surgery referred to as ‘rodding’ would allow me to be mobile and walk with braces and a walker…at the pace slower than a snail. This did not provide a good quality of life for me and so I opted for using a wheelchair for mobility and never looked back. It’s interesting that my relationship to disability started very early where my parents were told that when I was born that they should take me home because I did not have a long life expectancy – I think they told my parents maybe three months and now I am almost 58 years old. In many ways, that also affected bonding with my parents who were always worried about when the next ‘shoe’ would drop and something dramatic would happen to me. The influences of the medical model was alive as a young child as my life was always seen as somewhat precarious, in the eyes of others, whereas I saw my life very differently.

Q: How did you get involved in Disabled activism?

Fran Odette: I think much of my involvement around disability activism came from my own experiences of having to fight to be included and seen as someone who was capable as anyone else to do whatever; go to school, perform well on my job, be seen as someone who was a potential partner, a future parent, etc. When I was finishing my degree, I was dealing with an emotionally abusive partner who had followed me from one city to another. In my efforts to get out of the relationship, I met a wonderful counselor who supported me to see that in spite of my efforts to be the best that I could be, I was not going to be able to change my partner… that was up to him.

I came to realize that a lot of what I was experiencing was not only internalized sexism but also ableism. It was hard to tease out the complexities between the two, but I thought if I was struggling and was someone who was articulate, was able to advocate for myself, what about all the women with disabilities who were staying in abusive relationships because they did not have access to supports that could facilitate getting them out of the abuse and into safer spaces, such as shelters or other kinds of housing where they were not reliant on their abusive partners. It was my own experience in seeking supports, that I later became interested in wanting to learn more about other cis-gender women’s experiences who were dealing with violence in their lives. As a result, I later worked as a research assistant on the first official province-wide research for Office for the Status of Women (Ontario), looking at issues impacting women with disabilities in abusive relationships.

Q: Much of your work involves the exploration of the intersection of gender and disability with a particular focus on disabled women. What interests you about the exploration of disabled women’s lives?

Fran Odette: While I was completing my Masters, I was the only visibly disabled student in the program. Oftentimes, I would be asked by the faculty to comment on the experiences of disabled women. Perhaps it was unintentional, but I felt like I had somehow become the ‘spokesperson’ of disabled women… I began to wonder what were the experiences of other disabled women and so I took it upon myself to start reading anthologies by disabled women such as The Power of Each Breath, and began to see myself within the pages. I later ended up doing research on the DisAbled Women’s Network Canada, a grass-roots response to the failure of the mainstream women’s movement and also the disability rights movement to include disability and gender as part of their overall analysis leading to disabled women having to organize collectively to ensure that our issues were on the agenda.

Q: Some of your research explores institutional and personal abuses for Disabled people. Are you comfortable telling us a bit about what trends you have noticed?

Fran Odette: Yes, when I returned to Toronto I ended up working with the Disabled Women’s Network, Ontario where I shadowed mentors who had been the founding ‘mothers’ of DisAbled Women’s Network (DAWN), Canada. Ms. Pat Israel, was/is a mentor and wonderful colleague/friend who I feel indebted to for the incredible learning I gained from my early days as a ‘baby’ activist. While I was with DAWN, I met other non-disabled allies who felt that the conversations needed to be expanded as it was not just disabled women experiencing violence, but rather disabled people were vulnerable and at a higher risk for abuse by family, caregivers and other professionals. I later went on to work for the Ontario Provincial government where I worked on addressing the creation of policies and practices so as to ensure safeguards against abuse for persons who were institutionalized.

Q: What inspired your interest in narratives of the abuse of disabled people?

Fran Odette: I think that hearing the stories from people who have the lived experiences around violence are so important… and oftentimes it is those of us who are the most marginalized whose voices are erased or taken up in specific ways that are created by non-disabled people. Similar to when we are talking about supporting ‘victims’ or what I prefer to say are ‘survivors’ of violence, we need to remember that as providers we are not the experts. We have not lived with the abuser nor do we know the ways that survivors have ‘survived’ til now and what we need to do is ensure always that the person is in control. Similarly, I think that when reading texts about ‘how to work’ with disabled people oftentimes there is a particular ‘spin’ on the narrative, which may contribute further to seeing disabled people as ‘victims’ whose lives are already ‘tragic’ because of living with a disability. For many of us, we have had few opportunities perhaps even before getting into the abusive relationship, where we have not had control over our lives because of the dominant narratives that exist around disability, gender and violence. I feel that it is critical if we are going to make change and if folks who are committed to working in allyship with disabled people, LGBTQ+ and BIPOC communities, we need to listen and hear what people need and want because we are the experts of our experience and the role I think of service providers is to facilitate opportunities for folks to get the kind of supports that work best for them.

Q: Disabled people are frequently de-sexualized in our society, yet we are, of course, sexual beings. You have done work exploring sexuality and disability. What were some of the things that stood out to you as important?

Fran Odette: When I think about sexuality within a Western context, I would say that much of how we have come to think about sex and sexuality has been skewed by the media. The messages about what it means to be ‘sexy’ or ‘desirable’ are dominated by unrealistic expectations and images which are unattainable at the least and damaging for all of us. I think that in actuality we live in a world that is quite sex-phobic. When we think about “disability” and “sexy”, these two tend not to be in the same sentence. It’s hard to find good sex-positive information that speaks to the experiences of disability and what it means to be desired. In looking at this issue, I joined with Dr. Miriam Kaufman and Cory Silverberg to co-author a book called The Ultimate Guide to Sex and Disability. It really isn’t the ultimate guide, but it was meant to be a resource that spoke not just to disabled people. Throughout the book, the voices of disabled people were interwoven.

Q: Much of your work has focused on the importance of Disabled people’s narratives and of us speaking our own narratives instead of Abled people speaking over us. Can you tell us a bit about why sharing our stories is so important?

Fran Odette: I think that what is key is that disabled people have always been here; we have been part of community centuries before medicine, the church and government influenced the ways in which we have come to understand the concepts of disability and impairment. We also know that many of us have experienced a history that speaks to a long legacy that has not been kind to us, that has actively worked towards eliminating or excluding us from being part of community. I think that because of legislation and proactive policies and practices, we are seeing more disabled people being part of the community and there is a demand that we take our rightful place in society and that we are no longer willing to be hidden away because of our differences.

Q: You have a passion for teaching about disability. What are some of the important things that you want your students to learn about Disabled people?

Fran Odette: I love it when there are the ‘aha’ moments; when students come together and are seeing the connections between their own experiences of marginality and that of disabled people. To hear from students who have never heard our history and have wondered ‘why’ it is only in this course that I teach that this history is becoming known? Why is that? I also love it when students are able to make connections about their own experiences of disability and take up those connections in a space that felt safe to unpack their own assumptions and to start seeing disability as an ‘identity’ could be something that could be positive.

Q: Is there a way that readers can find out more about your research and social justice work?

Fran Odette: I would imagine, you might be able to do a google search with my name. Even I am amazed where I will find my name and the connections that exist.

Essential American Sign Language Signs Around COVID 19

A guest post by Trent University ASL instructor Jennifer Endicott about essential American Sign Language signs for COVID 19, social distancing, outbreak, mask, gloves, hand washing, sanitizer, high temperature, and other essential signs around this pandemic

Jennifer Endicott is an American Sign Language (ASL) instructor at Trent University. She was born in Peterborough and attended the Sir James Whitney school for the Deaf in her youth. Jennifer has worked at Sir Sandford Fleming College teaching ASL for 10 years, ran Skyhands Peterborough, and has worked with the Ontario Cultural Society of the Deaf where was the director for a year. Jennifer is a member of the Deaf community and has an incredible passion for sharing her language and teaching ASL. Jennifer has a passion for ASL

Disability, Deafness, Ageing, Queerness, and Other Complicated Embodiments