Serious Problems Experienced by People with Disabilities Living in Atlantic Canada
Types of Problems ExperiencedThe people with disabilities who participated in this study encountered serious problems that can be categorized under the following six themes:
- Inaccessible physical environments and transportation;
- Lack of access to health care;
- Issues with income and disability supports;
- Problems related to housing;
- Organizations not complying with the “Duty to Accommodate”; and
- Miscellaneous problems.
1) Inaccessible Physical Environments and Transportation
People with disabilities who participated in this study encountered numerous issues related to the inaccessibility of the physical environments that they interact with. Regardless of the type of disability, accessing public and private spaces was identified as a serious problem in a majority of interviews.
Issues identified in public spaces included: the lack of ramps, automated doors, accessible parking spaces, and main floor accessible washrooms. There were also issues with barriers such as plants and side tables being erected in enclosed public spaces, making it difficult for individuals with mobility related disabilities to access and navigate the physical environments where they obtain services. People with disabilities experienced inaccessible social service offices, healthcare settings, and government offices.
Crosswalks and sidewalks also proved dangerous for many of the research participants. Participants cited treacherous conditions such as: crumbling municipal infrastructure, i.e., manholes with deep craters around the edges (in one instance resulting in a leg fracture); curbs not cut at a proper slant; and few crosswalks, with automated signals and buttons that were often out of reach. These navigation issues were compounded in the winter by inadequate snow removal, making it difficult for people using mobility devices to use sidewalks, entrances, and driveways.
The frustration that came with trying to access public spaces was highlighted by several participants, with many stating that they would not return to certain public spaces because they felt that they were not afforded the same level of access as others.
The lack of accessibility and dangerous impediments to mobility in various forms of transportation was also identified as a serious problem. In one circumstance, a participant noted that an accommodation had actually been removed from a municipal transit system. Surprisingly, participants indicated that individuals with visual impairments no longer had access to free bus services. Furthermore, it has only been for the past three years that an audible announcement of transit stops has been available for transit users.
Research participants indicated that there was a significant lack of accessible transportation services available for persons with disabilities. Those that were available enforced strict waiting periods which, as one participant stated “caused a great deal of guilt and shame” when they were unable to comply. In one instance, in order to avoid the administrative and procedural stress of using the “Handi Bus” accessible transportation service, one participant opted to pay between an additional two to eight dollars more per day to get to work via taxi services.
2) Lack of Access to Health Care
I had mental health issues because my medical issues were not being taken care of…
Not being believed is really hurtful…
I know my pain is very real and I moved on…
It is like this till they see the MRI and then they say this is really bad. I wish I had someone who believed in me.
The above quotations demonstrate a common theme that emerged when people with disabilities interact with the healthcare system. They are often treated dismissively and not seen as credible in their own account of their health conditions.
Numerous studies have confirmed that persons with disabilities experience poorer health outcomes than persons without disabilities.5 This disparity in health outcomes is largely due to the social determinants of health, which are the poorer economic and social conditions they experience.6 The results of this research study strongly support this reality. Many research participants identified access to, and interactions with, the healthcare system as a serious issue in their lives. They expressed concerns that the public healthcare system did not respond adequately to their needs.
Participants shared their despair over long wait times and lack of access to specialists. For example, one participant with complex co-morbidities said that they had to wait over three years to see a specialist. The specialist was located in a neighbouring Atlantic province. The costs and the lack of access to transportation associated with travelling to another province exacerbated the barriers for this individual to receive the proper health care that they needed.
Navigating the healthcare system was also a significant challenge for research participants, especially for those who felt that their injuries had occurred at the hands of medical professionals. A participant felt that they were labelled as a “problem patient” and “Once you are labelled, you have a black mark on your file. People read that file and they dismiss you.”
Respondents shared that the attitudes of healthcare professionals in particular were problematic. They felt that they were experiencing “gaslighting,” i.e., were made to feel that they were imagining symptoms. There were many instances of people feeling that their experiences were not believed. Many times, people identified that often when they raised concerns they were met with dismissive responses. In an extreme example, a respondent shared how they were treated following a car accident, where medical professionals went so far as to accuse them of imagining the pain they were experiencing.
Research participants also expressed that medical professionals questioned their own understanding of their health and disability. As this respondent stated:
I have lived with Cerebral Palsy all my life. I have a good understanding of my body and I want to be as healthy as possible in the future. She (my doctor) does not listen to what I have to say.
3) Issues with Income & Disability Supports
People on social assistance are perceived the wrong way … They are not considering quality of life … it is a form of discrimination in my eyes; it is socially unjust.
The demographic profile of study participants shows that many of the participants live in poverty. Weak or nonexistent attachment to the labour force means that many respondents rely on social assistance programs for income support.
Respondents indicated that social assistance rates are woefully inadequate and are seldom adjusted to account for an increase in the cost of living. Participants confirmed that this presents a constant struggle to meet basic needs, such as food and affordable shelter, and to receive the supports they need. Respondents said again and again that the result is that many of them operate in survival mode, unable to get their needs met and participate fully in their communities.
The findings demonstrated that disability supports were often means tested and many require medical evidence to support their claim for support. Some participants struggled meeting rigid, “one size fits all” eligibility requirements or not qualifying because their incomes were just above low threshold limits for public supports.
Low economic thresholds had serious implications for some participants. In a few instances, respondents shared that their benefits would be lost following marriage, resulting in their partners becoming entirely financially responsible for all of their needs. This policy was particularly egregious in the case of a prospective spouse’s income barely exceeding the cut-off of $26,900. According to provincial policy in New Brunswick, for example, upon marriage the partner with a disability would lose their social assistance, health card, rent subsidy, and home care support. Two other respondents shared that their benefits were affected when they made the choice to live with family.
A few participants recounted having applications for CPP disability benefits rejected. One of them had a formal appeal denied. Another participant, a recipient of federal disability benefits, learned that the modest monthly allotment made them ineligible for provincial assistance.
People who participated in this study often talked about the “high cost of being disabled,” that is, many respondents did not have enough money to meet all their disability-related needs. These include mobility aids, specialized diets, medications, and physiotherapy.
4) Problems Related to Housing
A number of participants described their challenges in obtaining and retaining safe and secure housing. Research results indicated that none of the three elements of the Canada Mortgage and Housing Corporation’s definition of core housing needs, i.e., 1) adequacy (condition of housing), 2) suitability (right size for household), and 3) affordability (costing no more than 30 percent of pre-tax income)7 – were being met by research respondents. Respondents often dealt with substandard housing conditions, that were not suitable for their needs, and cost more than 30 percent of their pre-tax income.
Issues with landlord recognition of (already weak) tenants’ rights were of concern. Addressing substandard conditions in both private and public rental stock was raised often as a serious legal or other problem. People talked about experiencing very poor housing conditions, such as drafty, mouldy units that contributed to them experiencing poor health outcomes. Research participants outlined ventilation systems that were wholly inadequate. Many participants indicated long-term challenges with pests, such as bedbugs, silverfish, and rodents. Further, when they attempted to resolve their pest, repair, or remediation problems with their landlords, they were usually unsuccessful. Several participants took their concerns to the provincial housing authority and Rentalsman but reported that these inquiries did not lead to their problems being resolved.
The very tight private rental market and the lengthy waiting list for subsidized units were cited as reasons for the reluctance of some renters to advocate and assert their rights.
Housing was described as unsafe. Participants spoke about a lack of access to automatic doors, ramps, and elevators. The lack of accessible entryways and common areas was raised by those with mobility disabilities. Fear of emergency situations caused a great deal of stress because respondents felt that they would not be able to leave their building in a safe and timely manner.
Many research respondents spoke about the high costs of housing. Affordability concerns were exacerbated by the absence of rent controls. Private-market tenants served with rent increases have little recourse, that is, they must either find additional financial resources or move out. However, respondents reported that moving was also a challenge, because deposits and first and last month’s rent are routinely required.
Respondents also indicated that they experienced discrimination because they were on social assistance. That is, relying on social assistance or disability income supports made it extremely difficult to find new and/or appropriate accessible housing. Furthermore, the stress of paying private market rents often meant that they were not able to meet their basic needs, resulting in further health issues for individuals already facing significant systemic barriers.
People also spoke about aggressive and assaultive behaviour from their neighbours, which they believed was related to their disability.
Ever since I have been here, I and others in NB Housing have been bullied, harassed, and put up with name calling. People know that we have nowhere else to go. I have been called mental and insane, lots of name calling.
5) Organizations not complying with the “Duty to Accommodate”
The duty to accommodate is an important protection for people with disabilities and has been part of human rights laws for many years. It refers to the legal obligation to take appropriate steps to eliminate discrimination that results from rules that can have an adverse impact on people with disabilities. It applies in the workplace when a rule, job requirement, policy, or practice results in a barrier for a worker with a disability. An employer is legally required to accommodate or adjust conditions to enable a worker to do their job if the accommodation does not cause “undue hardship” to the employer. The duty to accommodate also applies to the education system (both public and private), where students with a disability must be assessed and accommodated so that they are given a fair and equal opportunity to meet their individual potential.
Research participants relayed many circumstances in which the duty to accommodate was not recognized, respected, and/or enforced in both an employment and educational setting. Approximately one quarter of all respondents indicated that a lack of employment accommodations was a significant barrier to finding and maintaining employment. Respondents sought disability accommodations in their workplace’s physical environment, with technology required to do their job, and in modifications to the hours of work to accommodate disability-related needs. In many instances, participants reported that employers were unwilling to provide the necessary accommodations when requested. For example, a worker with a visual impairment sought a larger monitor and more flexibility with their set hours as workplace accommodations. It took over a year and a half for this individual to achieve accommodations that were acceptable. When individuals were successful in achieving the accommodations that they required, they stated that this was due to their dogged determination and the involvement of third-party support and advocacy.
One respondent was told outright that they would not be hired because they were deaf. Some examples of the duty to accommodate not being respected in education include: a student being unable to take an exam because they could not accommodate their disability-related access needs; and another student attending a private school being left without adequate access to sections of the school, including the science labs and a stage where graduation ceremonies occurred.
6) Miscellaneous Problems
Other serious problems were shared with less frequency by research respondents. These included: child custody issues, problems with collection agencies, and the impact of criminal records.
Child Custody Issues
I have lived with vision loss since birth, my partner is using this as an excuse to not allow me custody of my son and to limiting visits/access. When we were together, our child would have been solely with me at many times, especially when she returned to her part time job. To me it is a discrimination thing. I am really getting frustrated with how long it takes to deal with this in the court system. How naïve the court system is with her and how she is using every convenient excuse to limit my time with my child.
As this quotation demonstrates, this person with a disability was clear that their disability was used as an impediment in child custody and their visitation rights. Further, this respondent shared that they faced obstacles in finding a lawyer who could appreciate and believe that he was capable of caring for his son. He felt that the court system did not see his “abilities” and instead focused on his disability. This respondent also spoke about how the court process was lengthy, prohibitive, and often favoured the non-disabled parent’s rationalizations for preventing child access visits with him. The respondent indicated that this was a long drawn-out process in which he tried mediation and often needed to find a new lawyer. His first lawyer retired, the second fell ill, and the third moved to another firm. Although this respondent worked full time, he still found the legal costs difficult to afford, especially as the length of the court process dragged on.
Consumer Credit and Collection Agencies
Two participants shared that their extremely poor financial circumstances caused them to consider bankruptcy. One was able to file a petition and declare bankruptcy. The second stated that they could not afford the fees and charges that accompanied the filing of a petition.
I am so poor that I can’t go through bankruptcy to solve the problem. Ideally this is what I would do. Unfortunately, I am single, disabled, no family, worked out of country, did not pay into the system. I cannot afford to go bankrupt.
Instead, creditors obtained judgments on outstanding consumer debt and assigned them to a collection agency. A lengthy period of harassment ensued, in breach of provincial regulations governing the conduct of collection agencies.
They have called me 12 – 15 calls a day. I block the number and they call from another number, and another number…I turned off my phone for a week and was totally isolated. It has caused unbelievable stress, affecting my mental health and physical health.
One respondent described their difficulties in finding employment due to a criminal conviction for assault. The assault occurred prior to being diagnosed with a psychosocial disability, i.e., bipolar disorder. Although they are currently receiving treatment and managing their disability, the criminal record has been used as a reason to deny them a job or even an interview. A criminal record suspension is a potential remedy, but the participant reported that the application process is cumbersome and costly. A record suspension would improve their chances of finding a job, but ironically they needed a job now to cover the cost of the application fee.
Problem Resolution and Outcomes
Participants’ efforts to resolve their problem(s) ranged widely, from informal complaints to landlords, government, and other authorities, to an organized campaign that included the use of social, electronic, and print media. Some sought help from service providers; others used formal appeal mechanisms.
Eight percent of participants used the courts or initiated appeal processes within government agencies or programs. The top three efforts to resolve a serious problem were: seeking the support of advocacy organizations or self-advocating (24 percent); reporting the serious problem to a person in authority, e.g., landlords, employers, principals, or program staff (19 percent); and contacting an applicable agency/organization (17 percent). Other efforts included approaching elected officials and medical professionals. Twelve percent of participants identified a serious problem but did not take any action to resolve it.
Of the 28 respondents, a total of 62 attempts were made to resolve the variety of problems previously shared. The following is a summary of those findings according to the main problem categories.
Responses to the inaccessibility of physical environments and transportation
Participants who identified accessibility of public and private spaces as a serious problem sought a resolution of their problems from elected officials, primarily municipal councillors, members of the Legislative Assembly and members of Parliament. They also contacted local governments, municipal transit systems, and schools. In addition, local business owners were approached over inaccessible venues. In the majority of cases, the accessibility issues were not addressed.
The reasons given for the lack of response include:
- municipal politicians citing strained budgets and competing priorities as reasons for failing to take proper measures;
- elected officials at the provincial and federal levels tending to refer complainants back to their municipal counterparts; and
- private businesses, for the most part, claiming that accessibility improvements were too costly and often impossible to implement due to the poor design of many older buildings.
A few respondents approached the municipal transit commission and failed to resolve their accommodation issue. A participant with a vision impairment tried to overturn a decision to eliminate free bus passes for the legally blind, a practice that had been in place for 84 years. They said that a meeting with the transit commission was unproductive: “They sat and doodled on paper and did not answer direct questions.”
These individuals even gathered letters that were sent to the city council, engaging the local media on the story. When a group finally had a chance to make representations to city council, the matter was referred to staff, without debate. One respondent stated how devalued they felt through the whole process:
I need to know that I count as a person. I don’t in this city. This is open season on accommodation. If they can put my accommodation at risk, everyone is at risk.
He went on to describe the issue as part of a toxic culture that reflected an “Illusion of Inclusion”:
If they understood what they were doing it might not happen. If you had to live with a disability for a week, things would change. If you could wear my eyes for a day you would understand.
New Brunswick’s small population and large land mass has contributed to a thin layer of community supports, concentrated in the province’s three principal cities, none of which has more than 75,000 residents. This was clearly an issue identified in the research when attempting to advocate on accessibility issues, even with urban residents, who struggled to find advocates. A respondent noted that services for the blind had declined over the last two decades, and staff cuts to a local CNIB office meant that supports and services were now based in another city.
The inaccessible built environment in one respondent’s community led her to make inquiries and seek out barrier-free arrangements in advance. She found that accessible environments were the exceptions, not the norm, and inquiries were not fruitful:
There are places that I have called and asked if they were accessible, they said yes, and when I got there, there were stairs. It is frustrating and insensitive when they do that.
In some cases, respondents sought local non-profit service providers and/or provincial advocacy organizations to support them in advocating for accessibility in public places. In two cases, provincial advocacy groups provided assistance that helped them to resolve their accessibility issue.
Avenues to resolve the inaccessibility of health care services
For the most part, efforts to resolve poor access to health care were limited to self-advocacy. In one case a patient advocate did help to resolve an emergency room dispute about strict COVID-19 protocols, but for the most part respondents did not know where to turn to address unfavourable interactions with the health care system. Several participants’ experiences with medical professionals were so egregious that they considered hiring a lawyer to help them resolve their disputes but were quickly dissuaded by the cost of retaining counsel, the perceived complexity of the process, and the time it would take for the legal system to respond to their unmet health care needs.
The overall problems with the health care system, in particular wait times and timely access to specialists, created high levels of stress for the people with disabilities who participated in this study. Further, this stress exacerbated already fragile mental and physical health conditions.
People found it difficult to advocate for themselves in the health care system because of the following reasons:
- They did not know where to turn to seek help. Complaints processes were not clearly communicated nor were they in accessible formats.
- They experienced communication challenges in comprehending documentation and verbal communications. As one participant explained: “Reading documents and filling out forms is difficult as we don’t understand a lot of what is written.” Support people were not available to help explain processes and documentation for people with intellectual and/or other cognitive disabilities.
- The everyday challenges of living day to day are so overwhelming that the thought of engaging in a long, complicated resolution process was not even an option to consider. Respondents talked about what life is like living in poverty, where the need to secure food and/or try to obtain primary care support was much more of a priority than fighting the system. In some cases, they did not even have the transit fare to meet with advocates or legal council.
Attempts to address housing issues
The vast majority of housing-related issues identified were left largely unresolved. Although on one occasion the Rentalsman was able to help a tenant break a lease, most tenants were not successful in improving their living situation. Appeals to private landlords and property management firms to address substandard housing conditions and housing-related health concerns were largely ignored or acknowledged with no follow-up.
Efforts to resolve housing conditions in subsidized units managed by a provincial housing authority seldom went beyond the complaint stage. This was due to the fact that respondents feared eviction “if they pushed too hard,” as one respondent stated. Another said, “As soon as I write something formal, I will be evicted.”
Generally, people felt that they were not listened to, nor taken seriously because of their disability. There was a sense that the rude and/or dismissive treatment that they received was because they were not seen as valued members of their community. The following examples illustrate the discriminatory treatment, vulnerability, complexity, and frustrations that people who participated in this study experienced when they tried to resolve their housing issues.
The superintendent was rude and he spread rumours about me. They would do nothing about an unsafe smoking area. I am in such a panic mode and am very fearful. I was really shaken up. I called my psychiatrist and he indicated that I need a letter from him to get the heck out of here!
I received a letter for New Brunswick Housing, so I called a lawyer. Then I called the Human Rights Commission. They explained the process and it is much too long. The superintendent and the owners are millionaires! The forms were too much for me to do. With my mental state this just all seemed impossible.
Efforts to encourage compliance to the “Duty to Accommodate”
For workplace accommodation issues, the vast majority of respondents initially sought resolution through the proper channels outlined by their employers. Most of these attempts were unsuccessful, with the only positive effort involving a third-party advocate.
Results for school-related accommodations had the same lack of success. In most cases, the educational facility did not take the request for accommodation seriously nor did it fully understand the needs of the student. The following quotes outline the lack of awareness, respect, and discriminatory treatment people experienced when they attempted to resolve the issues that they were experiencing.
I went to a private school for five years. I had a lot of accessibility problems there and I ended up leaving. They were insensitive and they would not help me. They would plan events that were on the stage and I could not get up on the stage. They would tell me that I could just sit at the bottom on the gym floor.
I was not given the accommodations I needed by all the teachers. I was supposed to have extra time for assignments, a quiet space for tests and longer time allowed for tests. They were not taking me seriously. I saw other students with sports-related concussions receive accommodations, but not me. They did not believe me or the forms I had.
Efforts to address miscellaneous problems
All efforts to address child custody issues remained unresolved for the person with the disability. People felt that due to their disability they were deemed “unfit” and incapable of caring for their child. In addition, people did not have the financial resources to fight for custody in the courts.
The individual who was attempting to get their criminal record expunged was able to file an application with the support of their faith community, which included a fundraiser for financial support.
In a few cases, people did resolve their issues, but even in those cases, the process was time-consuming, stressful, and financially debilitating. The following quote demonstrates the time and stress that was experienced, even with a successful outcome.
We found out that the collection agency conduct breached provincial regulations. The FCNB (Financial and Consumer Services Commission of New Brunswick) helped put an end to this.
After weeks and weeks of being harassed day and night I called NB Financial and Consumer Affairs. I left a message and a lovely lady called me back. She was able to find me a couple of important people in the collection company and contacted the Privacy Commissioner for the collection agency. She sent them an email and cc’d the woman from NB Financial and Consumer Affairs in hopes that this would make them pay attention.
Impact on People’s Lives
As illustrated, the serious problems that the participants in this study have experienced have had a profound negative impact on their lives. Participants’ problems resulted in extreme emotional and psychosocial issues; had a negative impact on their physical health; negatively affected their finances; strained important relationships; and greatly hindered their ability to participate fully in their community.
Emotional and psychosocial impact
I am so beat down that I can’t fight anymore...Whatever happens, happens. I do not have the energy either physically or mentally to carry on…
As this quote dramatically indicates, participants felt defeated emotionally, from having experienced their problem and then failing to resolve it. Most of the participants talked extensively about the emotional impact the problems that they experienced, or are experiencing, had had on their lives. They used the following words frequently to express the psychosocial toll their serious problems have had on their lives.
Many described their situations as “horrible, degrading, impossible and discriminatory.” The weight of these feelings affected their well-being and their ability to deal with the issues they were facing and to get on with their everyday lives.
Negative impact on their physical health
My disability worsened and will continue to do so. I was dismissed, not heard. I ended up in the ER unnecessarily. He [the doctor] diminished my pain, “suck it up! Lose weight! Move more!” I felt gaslit! He used every excuse to not deal with things. That arrogance is still there. My case is not easy. When I can, I work around him. One surgeon in the past said “no thank you” when asked to work with me. I am not a routine surgery either
As this quotation demonstrates, there was a general feeling of participants’ health needs not being understood, minimized, and/or not taken seriously. This resulted in them not only feeling emotionally exhausted, but also knowing that this was having a negative effect on their physical health. Participants often spoke about how health care providers (physicians/specialists) would not listen to the information provided by the patient. This led to medical issues not being addressed and the patient’s health being compromised.
Further, participants living in substandard housing talked about mould, rodents, poor air quality, flooding, drafts, and radon gas. Participants most definitely connected these conditions to the poor health conditions that they were experiencing, i.e., they were living in illness-producing environments.
Others research respondents talked about experiencing accidents due to unsafe conditions on the roads and sidewalks, which led to them being hospitalized. Lastly, in some cases the personal care support that people needed, such as bathing, healthy food preparation, and the administration of medication, was not being provided in their home as needed. This also led to deteriorating health conditions.
Negative impact on finances
I am poor because I am disabled. Disability means poverty to me.
As this quotation powerfully and simply declares, people’s disability results in poverty for them, leading to serious problems that further affect their finances. For example, because of the issues they faced, people:
- lost their jobs;
- lost their homes;
- were denied health cards (which meant they had to pay for many health needs); and
- had their benefits reduced or faced losing income support if they married.
One family turned to bankruptcy because they could not afford to keep their home. Others could not afford to go bankrupt. Those who could not afford bankruptcy are over their heads in payments or they are being constantly harassed by bill collection agencies. People cannot afford adequate housing. They are unable to meet their basic needs for a healthy diet, or specialized diets required for a medical condition. They have limited resources for transportation, dental care, orthotics, eyeglasses, and the assistive devices that they require due to their disability.
Negative impact on relationships
We will celebrate our 32nd anniversary next month. We are in such a bad place that it is affecting our marriage. We are paranoid about everything. My husband gets really upset. Anger issues started with this; he never had anger issues before. We are in a state of confusion, arguing. It is hellish.
It is clear that the serious problems people experienced had a negative impact on important relationships in their lives. Relationships with family and friends are vital to one’s well-being. Social connections, or lack thereof, can affect a person’s physical and mental health. If a relationship breaks down or if a person is feeling socially isolated, that will affect their ability to deal effectively with problems as they arise.
Participants in this study talked about the how the impact of their problems has affected their marriages and their family relations. They talked about social isolation and the need to have contact with people in their community to help them with their problems and relationship issues. The stress that serious problems had on household finances, the housing situation, and disability needs not being addressed often led to relationship breakdown.
Inability to participate in community life
It is frustrating to want to go places with friends and to say I can’t go in there. Some of my friends are good and some are not so good. I can tell that some see it as a burden. They don’t invite me to some things. There are so many things that I am not included in…
Isolation and loss of a community connection was a theme in these interviews. This isolation could be due to mental health, physical well-being, financial resources, or opportunities to build relationships outside of one’s home. The feeling of isolation and loss of participation in their community was exacerbated by the COVID-19 pandemic.
Although the serious problems participants in this research experienced had an overwhelmingly negative impact on their lives, there were also some positive outcomes associated with taking action. The following quote outlines how community advocates took up people’s causes and brought profile to their experiences.
CBC Radio will be doing a story of this issue with me and it will air in September. Ability New Brunswick and the New Brunswick Association for Community Living did success stories about me and my work on policy changes. Media Corp is also doing a story about the uncertainties people with disabilities face living in New Brunswick!
A few participants felt that engaging in social activism made them feel empowered. They felt that they could overcome the barriers that they face with effort and support. Some contacted politicians or agencies, some joined boards or advisory committees, some started or joined Facebook groups with similar advocacy interests. As one respondent explained:
Be persistent or fall through the cracks. Joined the board of Ability New Brunswick as they are advocates for people with disabilities.
Impact of the COVID-19 Pandemic
The COVID-19 pandemic created a public health and economic crisis that will linger despite advances in vaccine production and distribution. For New Brunswickers, the challenges began in March 2020, when the first case of COVID-19 was diagnosed in the province. As cases began to rise, a series of events began to unfold; schools closed on 13 March (and did not reopen for the remainder of the 2019/20 school year), and childcare for non-essential workers was shut down on 16 March. The Province declared a state of emergency on 19 March, which led to many New Brunswickers leaving the paid workforce. Between February and April 2020, 49,600 New Brunswickers lost their jobs.
This study has clearly indicated that COVID-19 has had a significant and unprecedented impact on the lives of people with disabilities. Participants spoke of economic uncertainty and were not clear about their eligibility for federal supports like the Canadian Emergency Response Benefit and its successor, the Canada Emergency Wage Subsidy, which limited eligibility to those who had earned, through employment, at least $5,000 in the previous year. This excluded many people with disabilities.
Although the pandemic demonstrated how quickly governments were able to mobilize resources to help non-disabled people, participants felt that people with disabilities were not a priority for government:
14 weeks into the pandemic and we are offered a pittance, one-time payment of up to $600 for people with disabilities. It was lumped in with another bill. Then they separated it, it still has not passed. We will likely not see any money before Christmas, if at all.
Accommodations for people with disabilities were weakened due to the strict application of public safety protocols. In one instance, hospital emergency room staff refused to allow a caregiver to accompany a client with a severe mobility restriction.
Participants also highlighted uneven access to supports, related to the COVID-19 pandemic. Several participants reported that caregiver hours were reduced sharply due to staff shortages caused by sickness or fear of virus transmission. At a time when more help was needed to ensure safety and overcome isolation, fewer resources were available.
Participants also confronted more ableism during the pandemic. One respondent shared that she was questioned about whether she “really had a disability” in front of a lineup of people waiting to shop during the early-morning shopping times offered for seniors and people with disabilities.
Participants in this study also said that their health was further negatively impacted due to the COVID-19 pandemic. A tenant with a compromised respiratory system contracted pneumonia when other tenants in her smoke-free building took to smoking indoors during a prolonged period of mandatory self-isolation. Her complaints of an inadequate ventilation system were ignored, and her advocacy was constrained out of a fear of retribution by the landlord and her fellow tenants.
5 Krahn, G. L., Walker, D. K., & Correa-De-Araujo, R. (2015). Persons with disabilities as an unrecognized health disparity population. American Journal of Public Health, 105 Suppl 2(S2), S198-S206. Fiorati, R. C., & Elui, V. M. C. (2015). Social determinants of health, inequality and social inclusion among people with disabilities. Revista Latino-Americana De Enfermagem, 23(2), 329-336. World Health Organization. (2020). Disability and Health. Available at: https://www.who.int/news-room/fact-sheets/detail/disability-and-health.
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