Serious Problems Experienced by Diverse People with Disabilities: Western Canada

Findings

1. Types of Problems Experienced

Participants with disabilities experienced serious problems that can be categorized in eight areas as described below. However, it is important to note that participants had, on average, experienced two to three serious problems in the last three years, with one problem often triggering another, highlighting the interrelated nature of the problems experienced.

Problems when trying to access services;
Employment-related issues;
Difficulties in accessing income and disability supports;
Problems related to child custody and/or child welfare;
Issues with insurance companies;
Experiences of all forms of violence;
Issues with landlords; and
Problems with people who have legal authority to manage trust funds.

Problems when trying to access services

Regardless of the type of disability, gender, and/or ethno-racial background of study participants, respondents most frequently identified many serious problems when attempting to access services. Issues occurred in diverse services settings – i.e., healthcare, government services, transportation, post-secondary education, banking, recreation, and in the justice system – leading to legal and other forms of complaints. Specific types of experiences can be categorized in the following areas:

i. Refusal to permit disability accommodations and supports

This was a common occurrence that often led to serious altercations and disputes. Examples include not allowing a person to bring a support dog to work and not providing a reader for a student with a cognitive disability so they could take an exam. People felt that the reason their disability accommodation was denied was never clearly explained and that there was an unwillingness to try and find a solution. The case below of a woman who was not allowed to bring her service dog to a healthcare service illustrates the lack of communication and resistance to resolve a problem experienced by many research participants:

Then all of a sudden, they were not letting me come with him and then they started making up stories about how they had to fumigate the place and that “so and so” had allergies and they had to clean the carpet . . . But it was afterwards … they were emailing us about the carpet and stuff like that. They didn’t say anything like that when I was there […] When I went back, I was in the waiting room and they were talking about me in a little room and then they came out and she was telling me that I had to leave. They called the clinic security to take me out.

There were many cases of disability accommodations not being provided when interacting with the justice system, particularly with people living with mental health disabilities. For example, a research participant outlined the difficulties they encountered when attempting to get mental health supports while they were incarcerated.

ii. Lack of understanding of people with disabilities

People felt that a disability accommodation was not provided due to a lack of understanding of their disability and thus the related supports required. Often a serious problem would emerge due to this lack of understanding, which was particularly acute for people with invisible disabilities, such as mental health or cognitive disabilities, chronic pain, or chronic fatigue syndrome.

There were many examples of people discussing how certain service protocols and procedures discriminated against them due to the agency’s lack of understanding of their disability, i.e., having to line up to receive a government service when a person could not stand for long periods of time or a person with a mental health disability being forced to do a cognitive assessment to renew their driver’s license despite a letter from their psychiatrist stating that they were fit to drive again. A lack of understanding of intellectual disabilities led to one man, who did not understand why his belongings had to be searched when exiting a library, becoming anxious and frightened. This procedure triggered past trauma, resulting in him becoming upset and resistant, and leading to him being banned from the library. Many people with invisible disabilities discussed incidents with transit police or fare enforcers who would question why a person was in possession of a disability transit pass, often issuing tickets and making comments such as, “You don’t look like you have a disability.”

There were multiple examples of healthcare and other professionals reacting negatively to a person experiencing a mental health “episode” at their service. It was also apparent that service providers were not able to understand the multiple stresses people with disabilities experience, which serves to exacerbate their mental health condition. The following example demonstrates how this lack of understanding can ignite a mental health crisis, leading to a serious incident.

I have panic attacks due to my endometriosis that was undiagnosed […] and I am trying to deal with multiple chronic illnesses without a General Practitioner. They kept sending me to different places, Emergency Rooms to clinics ... It took two years to find a doctor! I was living in an apartment before I got sick with no income and I used all my savings waiting for my disability support to be approved. I was in an anxious state. So, at the clinic I was crying and hyperventilating and the doctor told me she wasn’t comfortable examining me. I am panicking because I am anxious about everything else going on! I tried to convince her and my friend who was with me tried to help, but she said no. I was sitting there quietly and this staff member asked me to come to the front and she really quietly said you are banned and you have to leave. The doctor told my friend it is because of my behaviour. They basically banned me because of my disability! Because I had a panic attack at their office!

In a few examples, even doctors demonstrated a pronounced lack of knowledge of certain disabilities, particularly when a person had more than one disability. This had significant implications for people with disabilities who needed appropriate documentation for legal cases, insurance claims, and disability supports.

iii. Rude, dismissive, and aggressive treatment from service providers

Not understanding how a disability may present often led to people being treated rudely, condescendingly, and dismissively. Many people indicated the confrontations that ensued as a result of the poor treatment that they received from a variety of service providers, i.e., healthcare, government, and social service workers. Many people, particularly women with disabilities, indicated that they felt doctors did not listen to them or take the time to get familiar with their files before “diagnosing” them. They felt that they were being spoken to in a condescending and dismissive manner, which led to being misdiagnosed.

An Indigenous man who lives with a cognitive and mental health disability in a small town indicated that he avoids going to the hospital or other healthcare facilities because of the disrespectful treatment he receives from healthcare staff. This has resulted in him avoiding the treatment he needs. For example, he was once in so much pain due to a dental problem that, rather than face the negative and rude treatment he always experiences at the dentist, he chose to pull out his own teeth.

There were many examples of people, particularly those with intellectual, cognitive, and/or mental health disabilities, calling emergency services for support during a mental health crisis only to be subjected to aggressive, forceful behaviour from the responding police officers. Many of the people indicated that they were subjected to racism and queerphobia when dealing with law enforcement. In one case, an Indigenous man during a mental health crisis was charged with assault and was not read his rights.

Problems also occurred in recreational environments. In one incident a woman was denied participation in an art class because of ableist attitudes from the instructors.

I had asked to join the [Arts] Guild which my doctor recommended as part of my therapy and the woman said to my husband in private, “I've been meaning to talk to you about [her name]. I think that she's retarded or suffering from retardation […]” and my husband was like, “are you kidding me?” And the woman said yes, “her behaviour is very strange.” My husband came home and he was like, “Honey, you know how we say we will never keep anything from each other? I have to tell you what she said. I know it's a bad day but they said that they won’t let you join … because you suffer from retardation.”[…] Even if I was completely mentally handicapped. I just wanted to sit there and play with a thing of clay. What would be wrong with that?

Employment-related issues

Many serious problems experienced were connected to employment and can be categorized as follows:

Denied employment due to their disability;
Employer’s lack of understanding of their disability;
Fear of disclosing their disability to their employer;
Lack of provision of disability accommodations;
People feeling forced to comply with work-related activities that are detrimental to their health; and
Employer endeavours to terminate a person’s employment.

i. Denied employment due to their disability

Many research participants indicated that they were denied employment due to their disability. Stories ranged from indirect communication, such as a job suddenly not being available once they arrived at the interview, to frank statements of people being told that they were not hired due to their disability. In all of these cases, participants did not take any action to contest this perceived discrimination.

ii. Employer’s lack of understanding of their disability

Many participants, particularly those who live with invisible disabilities, found themselves in the position of having to explain their disability to their employers and/or colleagues. Participants had a sense that their supervisors did not believe their conditions and that they were “faking” or “just being lazy.” This lack of understanding served as the basis for people not disclosing their disability or being denied the accommodations that they needed to do their job, often leading to them risking their health by pushing themselves beyond their capacity.

iii. Fear of disclosing their disability to their employer

Many research participants with invisible disabilities indicated that they were fearful of disclosing their disability during the hiring process and once employed. People were afraid of not being hired because of their disability, losing their job once attained, experiencing discriminatory treatment from colleagues, and/or that they would be thought of as “less than” due to their disability. People with mental health disabilities in particular expressed that they lived “in fear” of being “outed” by experiencing a mental health crisis at work.

As this participant explains:

It impacts me a lot at work. I have a lot of fear around this. My thing is always like, ‘Oh am I getting enough sleep? Am I taking my medication? What if I have an episode? Or what if something happens at work? How am I going to deal with that? And how's my Board gonna respond? How’s my staff going to respond?’ Is there going to be an impact on our ability as an organization to do our job because of me? That's probably just paranoia but it really worries me. What if something legitimately happens...

As we know, people with disabilities experience high rates of poverty and unemployment and thus are fearful of losing the jobs that were so difficult to obtain in the first place. The fear of disclosing your disability is warranted, because, as this example illustrates, when a person is upfront during the interview process, there can be negative consequences:

They were looking for a tenant support worker which is a glorified name for being a desk clerk. I applied for the job and I went for an interview and the interviewee asked me what I am able to do and I said, “I could do some light stuff but nothing heavy. I can answer phones. I can let people in and out of the building […]” and she goes, “well what do you expect to get out of working for us if you can't do much? We need people to do more.” I'm like, “well I'm not applying for maintenance. […]” and they go, “well that's not what we're looking for. We're looking for people who can do more within our company. Sorry. You're not suited for us.”

iv. Lack of provision of disability accommodations

It was evident that if a person did disclose their disability, it was usually because they were unable to fulfill a task, resulting in a serious problem. Many research participants indicated that their employer refused to provide the accommodations needed for them to perform their duties. Individuals who asked for accommodations stressed the things that they could do in exchange for what they could not do. As this person explained in relation to their job at a grocery store:

They said this wasn’t going to work if I can’t do heavy lifting. They don't even think about looking at what I'm able to do for them. Can they fit me in somewhere else? … I can put tons of stuff on the shelf, I can put eggs and milk in the cooler, I can stock the frozen stuff in the freezers, but they wouldn't even look at what I could do. They just looked at what I couldn’t do.

In many situations, individuals requested a leave of absence due to a chronic or episodic disability and, even with medical documentation, they were denied. They knew this was not fair treatment because they often referred to the “Duty to Accommodate” (i.e., where employers are obligated to modify their processes, policies, and practices to ensure that people with disabilities are supported to do their job). However, they did not bring this up with their employer.

v. People forced to comply with work-related activities that were detrimental to their health

Given the hesitation to disclose one’s disability due to a fear of negative repercussions, people would push themselves past their capabilities to keep their jobs. This practice often led to serious problems with their employer because once their health began to take a turn for the worse, they would ask for some kind of disability accommodation, such as a leave of absence or taking sick days, which, in all cases, was denied. Without the accommodation, the individual is less able to perform their work duties and becomes more and more unwell – as this person with low immunity and a chronic health condition explains:

They said I was taking too much time off work being sick and that’s actually when I was passing kidney stones and stuff. So, it was pretty severe. And I didn’t really want to go to work when I was in that way… in pain. They said they’re putting me on probation and things were, I mean okay for a little while. But in October and November when flu season hit, I did get the flu. And at the time my supervisor was saying I only get one sick day a month. And so they wouldn’t let me take sick days so I said well can I take a vacation day? And they refused that as well. So, I kept working and this made it worse. Like, I ended up getting a very serious respiratory infection.

vi. Employer endeavours to terminate employment

It was frequently reported that once there was an increased need for accommodations in the workplace, people felt that their employer was working towards terminating their employment. In some cases, people were just fired without being given a reason, and in other cases, the reason was explicitly discriminatory.

In companies where workers were unionized and/or they were in managerial positions, there was the sense that their employers were creating an intolerable work environment in an attempt to make the person with a disability quit. Participants also sensed that their employer was making legal inquiries associated with the termination of their employment without their knowledge.

The following quote offers a concise summary of how the above six employment-related problems can lead to termination.

I needed a leave of absence and my doctor wanted me to do a gradual return. They told me there wouldn’t be a job for me if I took longer and I would lose my benefits. I need the money so there was this ‘Return to work plan’ that my doctor came up with. But at work, they kept pushing me and I felt forced to do it. They were consulting a lawyer through the entire process and I did not know this until the end. They never told me I would be fired, but that we could ‘mutually agree’ to part ways. So, I pushed myself as I was afraid to lose my job. This ended up making my health worse. I took a second leave of absence then lost my job.

Difficulties in accessing income and disability supports

Many of the people interviewed identified a problem related to difficulties that arose when attempting to access income supports and disability benefits. Specific issues experienced included:

Conflicting eligibility requirements;
Available supports not meeting people’s needs; and
The process to obtain supports being confusing and inaccessible.

i. Conflicting eligibility requirements

The interviews revealed that the process for obtaining provincial income and disability supports is quite complicated, even more so when a person lives with more than one disability. For example, a person who had chronic fatigue syndrome plus a pain condition was not eligible for financial support for the pain treatment because of their chronic fatigue syndrome diagnosis. In another case, a person was not eligible to receive a specific kind of healthcare treatment directed by their physician for one of their conditions, because they had opened an insurance claim to cover the cost of an assistive device.

ii. Available supports not meeting people’s needs

Many participants outlined problems that occurred because the supports they needed were not covered by disability benefits. For example, one person suffered great dental pain, making them unable to work or go to school. Dental work and pain medication were not covered by their disability benefits.

In addition, there was a sense that the more chronic a disability was, the harder it was to get treatment costs covered. That is, the greater the need, the fewer supports available. There was a sense that the “system” was intentionally set up to decrease a person’s chance of getting benefits, particularly those in most need, because it was too expensive. This lack of access to needed supports has resulted in people being less able to fully participate in society, as this person explains:

I think it all comes down to the bottom line of money. They don’t want (to support) one's chronic pains … think about how cruel this is for people with disabilities […] Someone who has a chronic condition, it only makes sense, they're going to have more medical bills all their life. So, if there's no way to alleviate this, like there should be some kind of program where it becomes more accessible and cheaper for them. The cost of everything – physio, counseling… anything like that, is very expensive but without it you can’t function! Like if you can't sleep, you're getting worse and you're going to have a harder time getting out of your condition and working.

iii. Confusing and inaccessible process to obtain supports

Not only are eligibility requirements unclear, many participants talked about how the process itself for obtaining supports was often confusing and inaccessible. For people with intellectual, mental health, and cognitive disabilities, it can be challenging to secure disability benefits due to difficulties such as gathering the necessary documentation, comprehension issues, sensory issues, and not being well enough psychologically to go through the application process.

Further, people explained that, ironically, the process to secure disability supports is often inaccessible. For example, people living with chronic pain, muscle weakness, and fatigue cannot line up and stand for long periods of time at government benefit offices where they are asked to wait in a queue. Also, people with cognitive, intellectual, and mental health disabilities may not be able to read and fully understand procedural guidelines or complete the necessary forms.

Problems related to child custody and/or child welfare

This problem was identified by many of the research participants, and often involved legal action. All of the people who reported this issue were women with disabilities fighting for custody of their children with their non-disabled male partners. Problems that were identified in this area can be categorized as follows:

Fear of child welfare agencies taking their children away;
Experiences of vulnerability in court when up against their non-disabled male partners;
Lack of support to parents with disabilities resulting in child welfare interventions; and
Lack of understanding of disability issues when deciding on child custody cases.

i. Fear of child welfare agencies taking their children away

This theme was quite pronounced for mothers with disabilities, regardless of the type of disability, and included women with mobility, intellectual, traumatic brain injury, and mental health disabilities. Women talked about the notion in society that women with disabilities are viewed as unfit parents. The fear of child welfare services was particularly acute for Indigenous women with disabilities:

You know I think the biggest thing was probably after my kids were born and having the diagnoses ... oh my God … I got it and then being really afraid of Child Welfare involvement and all of that because of the stuff that I was disclosing. And not that there was any reason for that to happen, but just that serious fear that it could happen and you know .... especially with being an Indigenous person and seeing what happens to women so frequently .... I think just even some of the ... compulsions that I have ... the obsessive behaviour and then some of the paranoia. I wouldn't talk about it at all because I was afraid that people would be like, “Oh, no she's not stable enough to have her kids.”

ii. Experiences of vulnerability in court when up against their non-disabled male partners

Women spoke about how their male partners would build their whole cases around how they were unable to care for their children due to their disability. To make matters worse, women with disabilities expressed an increased financial dependence on their spouses because of the difficulties they face trying to find employment. Most women who identified this issue felt that since their ex-partners had more money than they did, they were better equipped to fight and win custody in court.

He would say “how can she care for her, she is in poverty,” right. And he's like “look at her life and then look at mine.” The money he has, right… he has all these things. Like it's not a choice. Poverty is not a choice. I also have a rare skin disorder… so I can't walk very far… so he used that against me in court also.

iii. Lack of support to parents with disabilities resulting in child welfare interventions

Many women spoke about how they needed support to parent and that, without it, they face a real risk of losing their children. One woman who lives with complex physical disabilities found it difficult to arrange for home support workers to help her with household tasks, parenting support, and respite. This resulted in her three children being taken away from her and put in a continuing care home.

iv. Lack of understanding of disability issues when deciding on child custody cases

There was a sense that the courts did not understand the challenges women with disabilities face and the supports they need to be able to parent effectively. They felt that the perception was that a woman with a disability is less capable of parenting. Many women stated that although the courts generally seem to understand that it is in the child’s best interest to stay with their mothers, that was not the case for women with disabilities.

Issues with insurance companies

Research participants identified many problems when dealing with insurance companies. The types of problems experienced included:

Questioning the extent of the disability and/or injury;
Being denied insurance due to disability;
Fear of filing a claim; and
Discriminatory practices.

i. Questioning the extent of the disability and/or injury

Participants spoke about how insurance companies seem to doubt their needs and disability claims, even with medical documentation. There was a sense that insurance companies minimize the extent of a disability to avoid paying out a claim:

First of all, they told me that my injuries couldn't possibly be as bad as I said which is ridiculous because I got hit on the head by a minivan that didn't even hit the brake. They do this to everyone which is awful. They discriminate against everyone who is disabled and they try to force them back to work. This is systemic in our province and that's part of why I wanted to speak to you because this is something that is happening to everyone.

Further, it was felt that insurance companies prioritize money over people’s health needs:

It’s like the insurance company is driving my healthcare. That should not be. The insurance companies are just crooked. We have no protections from insurance companies. . . The motivation for them is simply money, not my health. They won’t fund care that even their own people recommended! The [name of the insurance company] hired an occupational therapist. He said, oh, he needs this, and he needs that. And yet, they wouldn’t fund it!

ii. Being denied insurance due to disability

Some people indicated that they were denied an insurance claim in writing because of their disability. In one case a young mother was denied home insurance because of her mental health diagnoses, even though she has a well-paying full-time job.

iii. Fear of filing a claim

A few people indicated that they would rather go without income support or the healthcare that they need than have to be subjected to the application process for insurance. Many people heard “horror” stories about how people with disabilities are treated and they could not endure the stress and humiliation of engaging in that process.

iv. Discriminatory practices

Many people felt that they were being discriminated against by insurance companies because of their disability and/or other marginalized statuses. For example, in one case an insurance company made a home visit to investigate a claim and the person with a disability felt that once the insurance company discovered that they were transgender, the claim was denied.

Experiences of all forms of violence

It is quite evident through this research that many people with disabilities, particularly women, are subjected to all forms of violence and abuse. Participants shared their experiences of sexual assault by healthcare professionals and personal support workers. There were many cases of people with disabilities experiencing verbal, emotional, and even physical abuse by primary care workers who come into their homes, i.e., withholding food, rough handling when conducting primary care activities, and screaming and yelling at their clients.

Issues with landlords

Research participants shared problems related to dealing with landlords. In all cases, participants felt that they were being exploited, disregarded, and/or treated poorly because of their disability. Problems with landlords fell into three categories:

Violation of rights;
Eviction to raise rent; and
Eviction due to ableism, racism, and/or homophobia.

i. Violation of rights

Research participants shared incidents of landlords entering their homes without permission. In one case, a landlord came into a woman’s bedroom while she was sleeping. There was a sense that landlords have no fear of violating participants’ rights because they are disabled – something participants felt landlords would never do with their non-disabled tenants.

ii. Eviction due to raising rent

This problem was shared frequently and stated as extremely problematic because, a) people with disabilities have great difficulties finding an accessible home, and b) people with disabilities are often low income, thus finding a place they can afford is rare. In one egregious situation, the landlord tricked the tenant with a disability out of her lease so he could raise the rent:

I lived there five and [a] half years and my rent always went directly to them. They got paid the rent early and everything and soon as the rent went up, they decided they wanted me out. And I can't read ... I read words backwards. They knew this. So, I signed this piece of paper because I trusted them and I found out later that was to get me out of the house. So, they took all my furniture, everything … and they threw all my stuff out on the street […]. They even took my pictures of the kids. I also had pets at the time but I had to let them go.

iii. Eviction due to ableism, racism, and/or homophobia.

People described situations in which they were asked to leave their homes for no apparent good reason. Many felt that it was because the landlords were racist against Indigenous and/or racialized people and, in one case, homophobic.

Problems with people who have legal authority to manage trust funds

A few participants identified problems related to being exploited by those with legal authority over trust funds left to them by their parents. All individuals who shared this problem live with an intellectual disability. They explained that when their parents died, they had left them money in a trust fund to be administered by a family member. There were concerns about how the family member was using their funds; for example: charging their visits to them to the estate; using the funds for personal items; and not allowing the person to determine how they would like to spend their own money.

2. Problem Resolution and Outcomes

Avenues Taken to Address Problems

Research participants sought to address the problems they experienced in the following ways:

Deal directly with the organization where the problem occurred;
Contact law enforcement;
Contact their union;
Engage third-party support;
File a human rights complaint; or
Pursue legal action.

People often pursued more than one of these avenues.

1) Deal directly with the organization where the problem occurred

As a first course of action, the majority of research participants attempted to resolve the problem directly with the organization where the problem occurred, i.e., with their employer, a government service office, or an insurance company. Individuals would attempt to comply with processes laid out by the organization to resolve their problem. For example, they would get the necessary documentation requested to contest a denied insurance claim or they would meet with their human resources department to discuss their options when a disability-related illness flared up at work. In all cases, the problems were not resolved by following organizational procedure. Participants felt that this was because the organizations were not committed to resolving the issue. For example, employers pushed for people to resign because they did not want to provide the disability accommodation. In one case, even though a person was approved for sick leave, their employer regularly called them inquiring when they would be back at work. With insurance company procedures, people felt overwhelmed with the amount of paperwork required, found the process confusing, and often, even if they believed they were complying (i.e., presenting a letter from a doctor confirming the need for the claim) their claim would almost always be rejected.

People also followed organizational complaints and appeals processes, which again did not result in resolving their problem. Often people felt that this avenue was ineffective because the organization was reviewing the complaint itself. One person, who was abused by her primary care worker, reached out to the homecare agency and, as she explained: “They were so reluctant to do anything because they are all on the same team.” In this situation nothing was done to remove the worker until the abuse worsened:

This was an ongoing issue […] she left me in the bathroom with no working phone. I would ask her for simple things like I want my slippers and she would yell at me and throw my slippers down in front of me. I would call the agency and they said they would talk to her, but the supervisor doesn’t do anything about it. You see it’s a free service so there is nothing you can do about it. I thought about applying for private care, but then I would lose the hours of care that are covered. They told me I could approach my MLA. They would never hear my side when I talked to them. Then one day I told them that she threw a broom at me, then finally they changed my worker.

2) Contact law enforcement

Contact their union people called the police through 911. However, all their experiences were negative and most people indicated they would never call the police again. In all cases shared, the person with a disability was also Indigenous. Here is one such example:

I was intimidated by the police after calling for assistance for a friend with a mental health issue. Instead of assisting, they threatened to take my baby if I ever called them again. My boyfriend had taken too much medication. It was early in the morning. The officers thought he had “lunged” at them. They handcuffed him but didn't arrest him. They didn't take me seriously. Pointed at my little guy and said they’d turn him into social services if they ever heard from us again. Then they said, “we missed breakfast for this.”

3) Contact their union

In many of the work-related problems shared, people reached out to their union to assist in addressing the problem. Unfortunately, this avenue also did not seem to be very helpful. As one person explained:

We don’t have a shop ckquo that really puts a damper on any possibility of help […] They weren’t responsive. Since last June I’ve had seven different staff representatives from the union and each time it’s like I have to update them all over again – there’s no consistency.

One individual with an intellectual disability who was fired from her grocery store job because, she was told: “…you are unable to do stuff that is needed and you are very slow” – reached out to her union, which she found was very supportive, agreeing to take on the “fight.” However, the termination was upheld because the employer fired her after a six-month training period. Further, the employer denied that the termination was discriminatory: “I asked, was it because of my disability and they said, ‘No that is not it, it is because you do not work fast enough.’ ”

4) Engage third-party support

File a human rights complainteached out to third-party supports to help them resolve the serious problem that they were experiencing. They identified contacting disability rights organizations, women’s centres, justice advocacy organizations, healthcare providers, political representatives, i.e., their member of legislative assembly (MLA), and cultural community supports, i.e., Indigenous, immigrant, and ethno-specific services. The effectiveness of these avenues varied depending on the nature of the support provided and the level of assistance the third party was able to provide. For example, one person described the bare minimum support she received from a justice advocacy organization when she unknowingly signed papers that led to her eviction. The advocacy agency indicated that there was nothing they could do since her signature was on the papers. That was the end of their involvement. Another scenario involved an individual with a mental health diagnosis who was in custody and was considered a high risk to reoffend. This person connected with a disability advocacy organization, which provided continual support over five years, resulting in the individual being released on probation, eventually being considered low-risk, able to establish healthy relationships, and enrolling in post-secondary education. However, in many situations, regardless of the commitment and support the third party provided, people were unsuccessful in resolving their problem.

A few Indigenous people, frustrated with the barriers they faced in attempting to resolve their problems through the various formal “systems,” turned to spiritual and cultural supports. “What really helped me was going to ceremonies and sweats […] nothing else.”

5) File a human rights complaint

Given that many research participants believed that the basis of their problem was discrimination based on their disability, reaching out to a human rights organization was a common avenue pursued. People’s experiences with human rights’ tribunals and commissions were dependent on whether or not they had strong third-party support to file a claim and/or their individual perseverance. In one situation, a person with a mental health disability who was banned from attending a post-secondary institution due to his criminal record won his case, with persistent third-party support:

It's my understanding that an organization can’t be using that (criminal record) as a justification to not include someone. The university was not wanting to really deal with this ... they put every little block up. Then we filed a Human Rights complaint […] and the arbitrator ruled in my favour… that a criminal record is protected under the Human Rights Code.

A successful outcome was rare however, and people frequently indicated that they were so exhausted and stressed out by the human rights complaint process, that they gave up. As this person explains:

I went to the Alberta Human Rights Commission. I was told I had a very strong case but year after year, it just dragged on and on and on without it going anywhere. And unfortunately, the stress of that and the harassment from my former employer who eventually terminated me for being disabled – in writing. I gave up. But I do think the Human Rights Act is pretty strong, but without any budget to support the Commission, it is ineffective. And companies and employers know that they can just wait it out and wear people down. They (Human Rights Commission) just don’t have the staff to cope with their caseload.

6) Pursue legal action

Many of the people who participated in this research took legal action to resolve the serious problem that they experienced. However, not one case resulted in the outcome desired by the participants.

Experiences with the legal process

Two common themes emerged in people’s experiences dealing with the courts.

i. Success of legal action was dependent on financial resources

The issue of money was identified as the key reason why people were unsuccessful when they took legal action. There were many instances of people with disabilities being up against institutions, i.e., post-secondary schools and employers, or their ex-spouses, all of whom had considerably greater financial resources than they did. In the few cases where participants did have the money to support legal action, they spoke about having spent thousands of dollars, drawing on their savings, and, in the end, losing their court case.

There was also a sentiment that the defendants they were up against were aware of their financial vulnerability, thus they stalled proceedings and kept the case active in court until the person could not afford to go any further. Participants also felt that defendants were not afraid of any legal recourse if they behaved maliciously.

Not having the financial resources to afford sound legal representation resulted in having to use legal aid services. These were often deemed insufficient for the following reasons: there were long waiting lists to get a lawyer; legal aid lawyers were not given enough hours to work on a case; meetings with legal aid representatives were inaccessible, i.e., they were too far away, and accommodations were not provided; and legal aid lawyers did not seem to be effective against formidable defence attorneys.

People also had negative experiences with other legal avenues available to low-income people:

So I tried going through all the various legal avenues that are afforded to people like myself, such as, Legal Aid, UBC law students, several advocacy programs … but I found that in 90 percent of civil issues you can only get advice and they'll only give you one session and then after that it's a long, long line to get back in and speak with the same people you were speaking with previously! So that is frustrating because I have provincial disability benefits and there are programs available through this for this very type of support.

In the context of employment disputes, it was stated that the legal process favours “employers because of the lack of resources we have.”

ii. Disability was used against them in court

In multiple examples, people felt that their disability was used against them in court. For example, in custody cases the ex-spouse would attempt to demonstrate how the mother with a disability was “mentally unfit” to care for her child(ren), often labelling her cognitive disability as a sign of mental instability that could be harmful to their children:

I had a legitimate doctor's note that says I have a brain injury. It is very clear I have a brain injury that affects my memory and yet this was used against me to remove my son.

Challenges with the legal system

In addition to more structural or systemic challenges, such as not having enough money to adequately pursue legal action and the limitations with Legal Aid services, participants also indicated other issues related to their disability that proved to be challenging when they pursued legal action.

Lack of credibility and not being believed

Many research participants expressed their sense that they were viewed as lacking in credibility because of prejudice and assumptions made about their disability. One person, who was a refugee living with post-traumatic stress disorder due to her war experiences, described her interaction with lawyers in her pursuit of a sexual assault charge:

There is a filter that people put on in their minds as an association with you. They do not believe you. Because you are not as important in society… at first, I didn’t understand and then I was like… whoa?! What is happening here? It felt like, in the end that I didn’t have the same rights as other people. I felt like my word meant less … because, you know, I am a refugee and a person with this condition…

Another woman, who pressed charges against a male nurse who sexually assaulted her in a hospital, felt that she was seen as lacking credibility throughout the whole process:

I went to the police to file a report and the police officer, was a woman and well, she was rough! She snapped at me and doubted me saying, “Well, maybe it was this or maybe it was that.” And I’m like, NO – I know what happened! Then there were meetings with the lawyer and the hospital had appointed their own investigator who interviewed me. Asked me all the questions about what had happened, etc. And I answered and started crying … so, I guess I lost credibility.

This same woman stated that because she had a physical disability and uses a wheelchair, she believed that the police felt she also had an intellectual disability. She felt this contributed to her not being believed.

Cognitive and psychosocial barriers

Many people spoke about the difficulties that arose in both preparing for and participating in the court process. On the stand, a person with a brain injury had difficulty remembering the sequence of events and/or particular occurrences. They were called a liar in the court due to this. Many people with cognitive, intellectual, and mental health disabilities spoke about their challenges in understanding the law, and the procedures and processes taking place. As this person explained:

My biggest problem was actually presenting everything coherently to a lawyer. Because I struggle to be coherent everything took much longer and therefore the legal bills were considerably higher. Now on top of that, trying to get documentation together and pull it all together, is also very, very difficult. And it’s something that you can't really ask somebody else to do. I had two filing boxes of material and a laptop full of material. And all that had to be sorted and organized. And every time I looked at it, I had a panic attack.

Outcomes

The vast majority of people who participated in the research indicated that there was no resolution to the problems that they experienced. This may be because a significant number of research participants chose not to take any action to address the problem that they were experiencing. The challenges outlined above – i.e., a lack of financial resources, minimal supports, fear of not being believed, or a sense that they lacked credibility – were all reasons given for people deciding not to pursue any avenue to resolve their problems. In addition, participants indicated that the ongoing stress related to the resolution processes would be too overwhelming, and, further, that even if they tried, they felt they would be unsuccessful.

As one woman explained after her mistreatment by the police:

I did not do anything. I was a 19-year[-old] Aboriginal female, shocked at their response […] I always assumed I would be stereotyped as a “drunk or drugged-out Indian woman.” I pick up on racism, whether overt, subtle, or patronizing very easily. So, there is no use.

Participants also said that they simply did not have the energy to fight because it was difficult enough trying to survive their day-to-day life, being isolated, poor, and lacking the disability supports they needed

In situations where participants felt that they had no recourse but to follow the process in place at the organization, the outcome was always negative, i.e., they lost their jobs, did not receive the disability supports or accommodations that they were asking for, were evicted from their homes, and/or were left feeling shaken and upset by the poor treatment and disrespectful process that they were subjected to.

In the few cases where participants had the financial resources, the will, and support to keep fighting for justice, they did experience moderate success, however at great expense and with compromise.

For example, one person, who was terminated from their job and not given a severance package, believed this was due to their disability. They initially filed a claim with a provincial human rights commission, which was “unresponsive,” and the process “dragged on and on.” Eventually they hired a lawyer and after thousands of dollars in legal fees and extreme stress, they decided to take a settlement, which required them to close the human rights case.

Many people said that they were so frustrated and humiliated with the process that they would never take action again. Here are some of those voices:

The whole process was very frustrating and disappointing. I would never file another complaint even if the issue was so blatant and obvious because the stress and disappointment is too great.
I will get other support and will do anything I can to avoid police assistance ever again.

I've just stayed clear of the legal system. Like I have absolutely no faith in the legal system. If I happened to be assaulted again, I would never go to the police. I would never report it. Never. And I know now why women don't.

In only two examples did participants felt that they were successful in achieving an acceptable resolution to their problem. In both cases, the participants had strong and unwavering advocates, who, as a team, never gave up until they obtained what they felt was due justice.

3. Perceived Causes

Poverty

The majority of people who participated in this research project experienced more than one serious problem. When asked “why do they think these problems occurred” and “what is the connection between them,” the majority identified poverty as the root of all the problems they and other people with disabilities experience.

Lack of knowledge of the experience of disability and the relevant supports required

Research participants clearly outlined that the institutions and services where the problems occurred were not knowledgeable about the various supports that people with disabilities might need to access their services and/or fulfill their employment duties. For example, people with disabilities may communicate differently, have different cognitive and comprehension abilities, and may not be able to physically engage with the processes set out by an institution, factors that ultimately led to a serious problem.

Discrimination

Participants often expressed that the impetus for the negative treatment that they experienced was based on the perpetrator’s fears, prejudice, and/or negative attitude towards people with disabilities. Further, there was a strong sentiment that because they had a disability and other marginalized identities, (i.e., being Indigenous, racialized, a woman, 2SLGBTQ+, etc.) they faced even more discrimination by the people involved in their dispute.

Exploitation

Research participants stated that because they lived with a disability, many people in power did not think that they – as tenants, employees, clients, patients, etc. – would ever challenge the problematic situation. This kind of impunity allowed those people to continue to act in unjust ways. There were many examples of people in positions of power acting in a blatantly unjust manner, including an employer regularly firing people with intellectual disabilities as soon as a free training period was completed or a landlord deceptively getting a person who could not read to sign papers that ultimately got them evicted.

Other causes

Research participants also identified lack of empathy and the lack of family and community supports as other causes of the problems they experienced.

Lastly, participants indicated that there is a domino effect, with the cause of one problem triggering another. For example, one person was in a car accident that required a number of different therapies in order to function, resulting in an ongoing dispute with an insurance company. Due to the fact that this person was unable to get the therapies needed, they were unable to fulfill their work responsibilities. This led to serious problems with their employer.

4. Effect on people’s lives

The effect these problems have had on people’s lives has been enormous. The effects are long-term due to the fact that often these incidents occur over a number of years, wearing away people’s emotional and financial resources. The following section outlines the main areas of the effect that these serious problems have had on people’s lives.

Negative effect on mental health

When asked: “What has been the effect this problem has had on your life?” the majority of participants stated that the stress and anxiety that they experienced related to their problem had a long-term effect on their mental health. Many said that after their negative and prolonged experience their self-esteem was greatly damaged, and they began to develop strong feelings that they did not matter. Some people also considered suicide as a means of getting out of their dilemma. The following quote is representative of what many research participants shared about the effect the problem had on their mental health:

…the stress of everything was killing me quite literally. I was regularly up in the hospital in the Emergency Room because of it. So, I … just had to stop. And the only way to stop was to accept an out-of-court settlement at a much lower value than I was entitled to […] And the way the municipality handled it and the additional stress that they caused, I strongly believe, greatly deteriorated my mental health even further. I was paranoid at one point. I was at the extreme end of depression. I was having major panic attacks. Mine are apparently very, very severe compared to most people. It all got worse, fast.

Not obtaining necessary supports to live a healthy, safe, and productive life

As we heard, participants were not successful in obtaining the disability supports needed to resolve their problem, which in turn created more problems, i.e., their health deteriorating, losing their jobs, and, consequently, experiencing housing insecurity.

Significant financial loss

Whereas the majority of research participants were low income and could not afford legal services, those research participants who could afford those services all reported that the process had a tremendous effect on their finances. They reported spending thousands and thousands of dollars, often draining their savings, only to receive a negative outcome, leaving them impoverished. People who had employment-related disputes lost their jobs and were thus left without an income.

Other types of effects

Another less frequently cited type of effect on participants was a sense of lost opportunity, i.e., missing out on post-secondary education or keeping a job that they found to be meaningful. Given that the problem resolution process was so difficult, frustrating, and at times humiliating, participants spoke about a loss of will and enthusiasm to pursue their dreams.

Lastly, a few respondents, all racialized and/or Indigenous, discussed how, after their extremely negative experience with the police, they now suffer from post-traumatic stress disorder and live in fear of law enforcement. This fear can manifest while they are doing normal everyday activities, i.e., driving or walking alone or with other racialized people. They reported that as soon as they see a police car or a person in uniform, they begin to get very anxious and fearful for their lives.

5. Reaction to the COVID-19 pandemic

Over the last year it has become increasingly evident that the COVID-19 crisis was having the greatest effect on the poorest and most marginalized populations in Canada – which includes people with disabilities, particularly those with intersecting marginalized identities.

The interviews for this research began just as COVID-19 was becoming an issue, and at the very onset of the country-wide lockdown. The researcher and interviewees were thus discovering and learning about this phenomenon together and the effect it was having, in real time, for research participants. Further, the timing of this research resulted in us obtaining people’s initial reactions to the COVID-19 pandemic. The following summarizes the main points shared.

Increased isolation:: The lockdown increased a sense of loneliness and isolation for the participants as people with disabilities, particularly those with intellectual disabilities. The few people who were in their lives, i.e., their support workers, were now not able to visit them in their homes and take them to their regular activities in the community.
Fear of getting sick:: For those people who needed assistance with primary care on a daily basis, workers were still coming into their homes, resulting in them feeling afraid and unsure about the risk to their health. Participants also felt that public education on the risks was not communicated in clear, plain, and accessible language.
Difficulty in understanding COVID-19 protocols and dealing with technology:: Many of the participants, especially those with intellectual and cognitive disabilities, expressed confusion around distancing rules and application processes for income support. Making the situation even worse was that their usual support people could only provide guidance using video-conferencing services. This was problematic because some participants did not have access to a computer and others found the technology challenging to operate without in-person support.
Unable to get needed healthcare services:: Many participants shared that because of the lockdown they could not receive the healthcare services they critically needed, e.g., physiotherapy. Those with pre-existing chronic health conditions were going to get “sicker” and were struggling the most.
Justice-related services delayed:: A few participants shared their increased stress and anxiety because their court cases, i.e., child custody or criminal cases, were put on hold or indefinitely delayed.
Lack of work income:: Participants talked about their dire financial situations related to having to shut down their small business or the loss of contract work, and some people shared their anxiety at having to stop their job search.
Forced to go into work:: A few participants shared that they were being forced to go into their workplace. In one extreme case, an older man with serious respiratory issues who was already in a dispute with his employer, was told he had to go into work or his job would be on the line.
Feeling forgotten and not valued:: At the time the interviews took place, there was a sense that emergency benefits were being activated for non-disabled people yet not for people with disabilities. This emphasized participants’ feelings that society does not value people with disabilities as much as non-disabled people, as this person explains: “The government is not willing to put in the kind of resources for us that they are doing now with COVID for healthy, non-disabled people.”

A sentiment that was often shared was that the COVID-19 crisis demonstrates how the government can find the money if they have to, to support people in need:

This whole COVID thing has highlighted how doable accommodations are…. This is making me really, really mad. Like in employment. I have been asking for these things for a long time and now when it effects non-disabled people, suddenly it can be done?!

Lastly, an interesting and somewhat surprising finding was that some people interviewed were not stressed by the pandemic at all. They expressed that these types of restrictions, income insecurity, and isolation were the way their lives had always been. This sentiment was offered a few times, intimating feelings of retribution:

I'm seeing the rest of the world maybe for the first time, deal with things and deal with loss. Things that I've dealt with all my life. And so, for me COVID has not made things worse ... there is just more awareness of what a bad life is like.

Date modified:: 2022-01-18