The Toxicity of “You Should Be Able to Get Over It”

The Toxicity of “You Should Be Able To Get Over It”

By Derek Newman-Stille

Content Warning for discussions of abuse, family violence, stalking, and ableist violence

Like many disabled people, I get a lot of people (often random strangers, but sometimes friends and family) telling me “you should be able to overcome your disability”. I have people randomly come up to me on the street, knowing nothing about me who tell me that I should be able to overcome my disability and that I should be able to walk without my walker. No matter how much detail one shares with them, that narrative still persists because it has nothing to do with the reality of the situation. Especially since the same things are frequently said by family and friends who know better and have more background on what has occurred.

There is a reason for this. It is because all of our media about disability is media of people “overcoming” their disability and becoming “better people” i.e. more able-bodied. This type of media is called “inspiration porn”. It constructs disability as a narrative to inspire abled people using and abusing disabled experience. This narrative is so strong in our society that it has been taken on by disabled people ourselves and many people in our community talk about “I’m hoping I can overcome this and be like I was again”. This is toxic and dangerous to our community, especially where it concerns permanent disability. Abled people expect disabled people to overcome their disability, so they don’t feel the need to provide us with accommodations. They think of disability as something that can be defeated by hard work. As I said, complete strangers will come up to me and tell me that I should work harder to become abled and genuinely believe that if I give up my walker and my cane, I will miraculously be free of disability.

Now, I want to talk about a toxic encounter that I had today. For folks that don’t know me, the permanent damage to my spine occurred due to abuse from my biological father. He permanently damaged 5 vertebrae in my spine (along with damage to my eye, ear, head, and nose). My disability is firmly linked to the abuse I experienced. Along with my physical disability, I have chronic depression, anxiety, and post traumatic stress disorder (PTSD) as a result of continual abuse throughout my childhood.

Opening up about abuse is tough, and it is more tough because people disregard and ignore it. Today I took a chance and opened up to a friend about it. He had just bought a black truck, and I mentioned that he would have to call before visiting and shouldn’t drive behind me or beep at me because this is triggering. I mentioned that it is triggering because by abuser (my biological father) used to drive a black truck and I knew when I saw it pull into the driveway that I was going to be beaten (he beat me whenever he got home). When my mother, my sister, and I finally escaped from my biological father, he continued to stalk us. He would slowly drive behind me when I walked to and from school. He would drive behind me when I walked to school, and he followed me to the home that we escaped to and beat my mom and I at that new location.

When I mentioned this to my friend, his response was that I should overcome being triggered and that if I worked hard enough, i could get over it. It’s something that I have heard far too often in my life and it is something that I expect I will continually hear. That doesn’t mean it doesn’t do damage. In fact, trying to tell people they will “get over it” often does further damage. Telling someone this brings that person right back to the moment of their abuse. It reminds that person that you don’t take their experiences seriously or that you are willing to listen and instead instantly judge. It also reinforces the idea that disability is something that we should “get over” and that we can just disregard and repress everything we are going through. Disabled people, and especially people with psychological disabilities like PTSD spend most of our time pretending we are “okay”. We do this because we live in an ableist society where we are regularly told that it is NOT OKAY to be disabled and that we are expected to hide our symptoms and experiences to make abled people feel better. We live in a world that disregards us.

Now, I want to talk about what “triggering” means because mainstream society makes fun of it and treats it as something not serious. Triggering is not a joke, isn’t not a “snowflake” response. It is serious. In my case, a triggered response is related to my PTSD. Because of constantly seeing his truck, my brain literally had to encode it as a threat. That is a survival mechanism. Our brains encode certain things as threats so we can survive. In the wild, this is done by threatening or dangerous animals. Once something is a threat for long enough, it is coded in the brain. It is written as a pattern so that we respond to it with anxiety, fear, and a fight or flight response. This is a biological experience. Our bodies are flooded with brain chemicals that are meant to let us get away from the threat. Our bodies are flooded with adrenaline. Our heart rates increase. Our breathing becomes shallow. Our senses become much more attuned to threats. This isn’t “just” an emotional reaction. Our entire body reacts to it and there is no way to stop this process.

My experience of being “triggered” is related to PTSD from an early life of constant violence. My brain is literally encoded to be constantly on edge and prepared for attack. This means that I have panic attacks regularly throughout the day and that I change certain behaviours like needing to sit with by back to a wall. It also means that I react to sounds with panic and certain sights with panic. When something “triggers” someone with PTSD, the experiences are physical and psychological.

PTSD is NOT something that one “overcomes” or “gets over”. Psychiatrists, neurologists, and other medical professionals have spent many many years studying the effects of PTSD and there is no way to “get over it”. There is no cure. There is no magic eraser that undoes it. It is there forever. We only learn to find ways of still living our lives with it. One of those ways is to be aware of our triggers and try to manage them.

So, what happens when I encounter my triggers? For many of us with PTSD, we experience flashbacks of the traumatic experience. Now, this isn’t the same as remembering or as memory. It involves reliving the traumatic even as if it were happening again. That means we are right back there at the moment of being attacked, being beaten, fighting for our survival. When triggered, I am brought right back to the moments of being beaten, of having my spine damaged, of having my eye damaged, of having my nose damaged, of being strangled. I experience a narrowing of the world around me. I become hypersensitive to sounds. I react as though I am about to be attacked. I have trouble breathing. My heart pounds and hurts. I am right back to where I was when being beaten, feeling no escape, and feeling like my life will be defined by being beaten daily. Like most people with PTSD, I have worked for years to hide the reaction that I have. I no longer curl up in a ball. I still will stumble and have to fight to stay upright. I have learned to look off in the distance so people can’t see the panic in my face. I have learned to hide the reaction to sound by pretending to stumble rather than let people see that I jump at every sound.

Now, I want to illustrate that this is not something that one can “get over” or “overcome”. Trauma literally changes the physical makeup of the brain – yes, that’s right the PHYSICAL make up. It’s not “just emotional”. It’s a physiological change. There are permanent changes to the amygdala, hippocampus, and prefrontal cortex. Our bodies also become accustomed to constant influxes of cortisol and norepinephrine, which has impacts for our overall hormone structures and impacts for the heart. Parts of the brain LITERALLY change shape because of trauma.

And yet, people tell us to “overcome” and “get over” it. Not only is this built into the way that disability is perceived by society. It is also built into the way that we as a society have constructed mental health. We praise “resiliency” and pretend that people can bounce back from things. We tell people that they are great at “moving on”. We all participate in pretending that everything is something we can “recover” from.

The friend who told me to get over it today told me that I should be able to recover from it and didn’t understand that this was a toxic response or the damage that it does. It brought me right back to dealing with my abuser, but also brought me back to all of the experiences of trying to tell people what I went through and trying to get help while I was being abused. We have a society that uses “get over it” as a way not to deal with anything and we pretend that it is effective, when it actually means that people like me just become more silent about it. He told me “you have the power to change the way you react” and “if you learned it, unlearn it”. These are not unique statements. They are statements that are often used to disregard people’s experiences. They are ways of perpetuating violence. When I pointed out the science behind trauma, I was told “I am sorry if I offended you”… which we refer to in the social justice community as “the non-apology” and is colloquially called the “sorry not sorry”. But it also reduces our experiences of trauma and pain to being “offended”. We aren’t OFFENDED, we are genuinely hurt. The reaction we have is not anger. It’s trauma. It’s damage. People will ignore the science and reality of the situation to reduce it and pretend that it is nothing. And they do this because our society conditions people to ignore everything to believe that “things get better” and “you can overcome anything” and “you can beat this”. These statements are toxic. They are part of toxic positivity and disregard what people actually go through. They are attempts to undermine and silence people who are talking about their experiences and they are a reminder that people would rather not listen to us or our experiences.

What can you do instead of saying “You should get over it”?

1.Listen compassionately and openly to the person about their experiences.

2.Acknowledge what they have gone through

3.Realize that they are the expert in their experiences and know more about them than you do.

4.Work to try to get rid of triggers when possible.

5.If it isn’t possible to get rid of triggers, find out ways of making them less triggering. Remember that the person with PTSD is a good resource on how to manage their triggers, so listen to them.

6.Make sure that if a person is going through a PTSD flashback that you help to get them to somewhere safe and help to make the environment around you safe for them.

7.Don’t make it about you. You don’t know their experience. You aren’t them and you don’t know what they have gone through. This is about them.

8.Acknowledge the vulnerability and work that it took for them to share this with you. Recognise that they have done so to be closer to you and to be more open with you. If you disregard this, it could damage your friendship/relationship with them.

We are tired of “Eventually”

By Derek Newman-Stille

“Eventually” is a word disabled people become accustomed to regularly. We are told “eventually this space will be accessible”, “we will put in ramps eventually”, “it’s not one of our top priorities right now, but we will get to it”, “we are hoping to one day be accessible”. These tactics of delaying things to the future, to later, are methods of maintaining the status quo while pretending that people care about accessibility. Instead of saying “we aren’t accessible and won’t be”, instead people say cast accessibility into the future, into “eventually”. It is a promise that doesn’t have to be kept and it is a method for getting us to stop asking about accessibility.

I’ve been in far too many circumstances where people have told us that accessibility “is the plan for down the road when we have more resources” while in the meantime, I am not able to participate, to be in physical spaces, or to be included. Commonly these are city commentaries about “eventually” having accessible sidewalks, “eventually” putting in ramps, “eventually” making public spaces spaces that I can access. But if asked “when can I count on that happening by?” the only responses tend to be “we already have it planned for the future” or “right now we don’t have the funds available, but we will get to it soon”.

People don’t (or don’t want to) realize that when they make a space inaccessible, they are sending a very explicit message that we disabled folks don’t belong and CAN’T belong in that space. They are explicitly saying that we shouldn’t be there.

By telling us that things will “eventually” get better, they are casing things into an unforeseeable future where, inevitably things will happen that mean that funds are re-allocated elsewhere.

As the COVID outbreak has meant that various cities are taking over public sidewalks for outdoor patios, these patios are being placed across the only accessible walking spaces. When I have asked business owners in my own city, Peterborough, Ontario, what they plan to do about making spaces inaccessible, I have been told that the city will “eventually” put in ramps and “eventually” create ways to move into spaces that the patios have made inaccessible. I have responded with “what do I do until then?” only to get shrugs back. This sends a message that disabled access is always a thing for the future, never a priority. Abled people are literally being prioritized so they can eat outside while disabled people are being told that they will “eventually” get to be able to walk downtown. There is a clear message here – disability always means a de-priority.

Another issue that occurs is that when accessibility measures are made, they are still ignored. In the photo below, I share an image of a restaurant in Peterborough who put garbage bags across the ramp that the city eventually made, thus continuing to block disabled access. I have permission to share the photo anonymously, but the friend who shared this with me pointed out that he approached the business owners and asked them to remove the garbage bags so that there could be disabled access and was told “don’t worry about it”.

Image and caption above this photo by a friend who prefers to be kept anonymous. Photo shows garbage bags across the only accessible ramp to the restaurant. The post above reads “spoke to the good folks at Ariyana about maybe not blocking the ramp. Was told not to worry about it. Said it would impede people with canes or wheelchairs or walkers but was again told not to worry about it”.

This sends a strong message that accessibility is not a worry by this business and I don’t think this is limited to one business. This is something common – treating disability as an inconvenience and disabled people as though we don’t belong. We get this message at every location that doesn’t put in ramps, that doesn’t create accessible toilets, that doesn’t make their venue accessible. “Don’t worry about it” speaks to us of “I don’t value you enough to care about your needs”. “Eventually” sends the same message while pretending that something will be done in the future.

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

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.

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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?

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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.

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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.

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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.

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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.

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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.” (https://www.ola.org/en/legislative-business/bills/parliament-38/session-1/bill-22)

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.