Monitoring Individual Human Rights Experiences in St. John's
Part I – Context to ground monitoring efforts
Demographic and socio-economic profile of monitoring site
This section provides a proxy demographic and socio-economic picture of people with disabilities living in the areas where the monitoring site was located. It is meant to provide contextual information within which to place the findings of this monitoring project. The project included participants from St. John’s. Current data at the local level on the demographics of people with disabilities is not available. However, data available at provincial level and estimations when possible at sub-provincial levels can provide a proxy snapshot of the context in which study participants live.
Demographic profile
According to Statistics Canada2, in 2001 approximately 60,500 people in Newfoundland and Labrador, which represents 12.3% of the total population, had disabilities. From this data, it can be estimated that about 21,269 St. John’s residents had disabilities (Statistics Canada). It should be noted, however, that it is also possible that this estimate is too low, based on the greater number of disability services and advocacy groups, as well as a more accessible infrastructure, such as audible crosswalk signals and the Para-transit system, factors which might make this area somewhat more attractive to people with disabilities. The most common types of disabilities among the working age population were those related to mobility limitations, followed by hearing and visual disabilities. Almost all types of disability also increase with age.
- Note #2
- Participation and Activity Limitation Survey (PALS) 2001.
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Socio-economic profile
Income
According to Statistics Canada, in 2006, the average weekly earnings of a Canadian with disabilities were $696.36, in contrast to the $747.08 made by Canadians without disabilities (Statistics Canada). Currently, income supports are not adequate given the high costs of accessibility. According to an article entitled ILRC Focus Groups: Housing-2008 – produced by the St. John’s Independent Living Resource Centre – the lack of adequate income is a severe barrier to a number of needed supports, including accessible housing – which typically costs 30% more than standard housing – as well as adequate transportation (ILRC). The province offers Income Support Benefits which provide a fixed monthly financial benefit to support people living with difficult circumstances (Newfoundland Labrador Department of Advanced Education and Skills).Such supports, however, are criticized for not providing enough aid to people with disabilities, who often live in poverty due to inadequate income supports (ILRC).
Employment
According to Statistics Canada (2006), the overall unemployment rate in Newfoundland for those with a disability was 24.8%, compared to 19.4% for those without a disability. As stated by the ILRC’s report Why Don’t Those People Work? (2009), there is a widespread belief amongst people with disabilities in St. John’s that they are not contributors to the well‐being of Newfoundland and Labrador. Consumers and persons with disabilities can and do want to work, yet it is difficult to find gainful employment. Many donate volunteer time and various types of expertise. The report cites four important barriers to employment for people with disabilities. These include a genuine fear of losing essential supports, poor medical coverage, lack of access to reliable transportation, and poor home supports. Provincial assistance for employment is provided through the Employability Assistance for Persons with Disabilities (EAPD) program. This program assists individuals with disabilities in acquiring skills, experience and necessary supports to enter and remain in the workforce (Newfoundland Labrador Department of Advanced Education and Skills).
Housing
People with disabilities face a number of barriers that prevent them from obtaining accessible housing in St. John’s. These include high rates of poverty, attitudinal barriers and communication issues. According to a report by the ILRC (2008), the city of St. John’s is lacking accessible housing. Currently, wait times for accessible housing ranges from 1 to 3 years. As a result of these long waiting periods, people with disabilities tend to “settle” for less than ideal housing for their unique needs. This situation leads to increased isolation amongst those in this group, as well as being forced to leave preferred communities and peer groups in search of better housing (ILRC). In response to this situation, there are a number of organizations such as the ILRC and the Coalition of Persons with Disabilities that work to provide housing assistance for people with various types of disabilities.
Part II - Discussion of findings
People interviewed
Participants in this study include both males and females of different age groups who live with various disabilities. The specific socio-demographic characteristics of the participants are summarized in Table 1 a - g below:
| Attributes | Number of Participants |
|---|---|
| 18-24 | 2 |
| 25-34 | 7 |
| 35-44 | 17 |
| 45-54 | 13 |
| 55-64 | 5 |
| 65+ | 3 |
| Unassigned | 1 |
| Attributes | Number of Participants |
|---|---|
| Elementary | 4 |
| Secondary | 14 |
| Short Course/Diploma | 2 |
| Vocational | 3 |
| College/University | 23 |
| Unassigned | 2 |
| Attributes | Number of Participants |
|---|---|
| Female | 27 |
| Male | 21 |
| Attributes | Number of Participants |
|---|---|
| Since birth | 22 |
| Acquired last 5 years | 3 |
| Acquired 6 or more years ago | 21 |
| Unassigned | 2 |
| Attributes | Number of Participants |
|---|---|
| Mobility | 21 |
| Sensory | 3 |
| Intellectual | 3 |
| Psychiatric | 9 |
| Multiple disabilities | 11 |
| Other | 1 |
| Unassigned | 0 |
| Attributes | Number of Participants |
|---|---|
| Owner | 7 |
| Lease | 2 |
| Rental | 33 |
| Unassigned | 6 |
| Attributes | Number of Participants |
|---|---|
| Yes | 15 |
| No | 31 |
| Unassigned | 2 |
The sample is almost gender balanced with somewhat more women than men (56% women). Most of this group is middle-aged, with 50% of the interviewees being in the age group of 25-44, and 38% in the group of 45-64. The majority of participants have a mobility disability and most of them were born with a disability. The group is fairly well educated, with 48% of participants having attended university or college. Despite this high percentage, 65% indicated that they were unemployed at the time of the interview.
The data presented here may be unique to this particular group of individuals and therefore might not be representative of all individuals in the areas monitored. It is important to consider this distribution of socio-demographic characteristics when interpreting the findings of this study.
Domains of life and human rights principles
In this study, five key human rights principles were explored and analyzed as they pertain to eight important domains of life: social participation; privacy and family life; education; work; information and communication; access to justice; income security and support services; and access to health, habilitation and rehabilitation services. The key human rights principles considered foundational to this project include: autonomy; dignity; participation; inclusion & accessibility; non-discrimination & equality; and respect for difference. For each domain considered in this study, participants’ experiences were also explored in relation to the five human rights principles.
Social participation, Income security & support services, and Work were the domains with the highest number of reports. In contrast, the domains of Access to justice and Information and communication counted the lowest number of reports (Table 2).
| Domains of Life | No. of persons | Percentage (%) |
|---|---|---|
| Total | 48 | 100 |
| Social Participation | 47 | 98 |
| Income Security and Support Services | 37 | 77 |
| Work | 36 | 75 |
| Health, Habilitation and Rehabilitation | 34 | 71 |
| Privacy and Family Life | 33 | 69 |
| Education | 18 | 38 |
| Information & Communication | 11 | 23 |
| Access to Justice | 11 | 23 |
Under all human rights principles, both positive and negative experiences on the grounds of disability were reported, although negative experiences either outnumbered or closely matched the positive responses (Table 3). Participants reported situations when they felt disrespected and their dignity devalued, and also experienced discrimination as the most prominent negative experiences. At the same time, many people reported situations when they felt included as well as instances when their dignity promoted. This more positive outlook may signal that, despite ongoing disparities, positive changes are also underway for persons with disabilities at this monitoring site.
| Principles | Percentage (%) |
|---|---|
| Dignity | 12 |
| Lack of Dignity | 15 |
| Self-Determination | 6 |
| Lack of Autonomy | 8 |
| Inclusion and Accessibility | 14 |
| Exclusion and Lack of Accessibility | 14 |
| Non-Discrimination and Equality | 2 |
| Discrimination and Inequality | 12 |
| Respect | 4 |
| Lack of Respect | 12 |
Social Participation
Social participation emerged as one of the most significant domains in the lives of people with disabilities in this study, garnering responses from nearly all interviewees (Table 4). For the purpose of this study, social participation is defined in a broad sense, including cultural and political life, sports, recreation and leisure activities. Participation and daily living experiences are of central importance to understanding significant aspects of life for people with disabilities.
| Principles | Number of Persons | Percentage3 (%) |
|---|---|---|
| Total | 47 | 98 |
| Dignity | 25 | 53 |
| Lack of Dignity | 39 | 81 |
| Self-Determination | 8 | 17 |
| Lack of Autonomy | 9 | 19 |
| Inclusion and Accessibility | 36 | 75 |
| Exclusion and Lack of Accessibility | 35 | 73 |
| Non-Discrimination and Equality | 2 | 4 |
| Discrimination and Inequality | 24 | 50 |
| Respect | 8 | 17 |
| Lack of Respect | 29 | 60 |
- Note #3
- These categories are not mutually exclusive as each participant could report up to three different situations and each situation reported could involve both positive and negative experiences. The percentages throughout this section are calculated on the basis of the total number of interviewees. The total in each table indicates the number of participants who reported experiences related to a specific domain considered in this study.
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As with other domains, lack or loss of dignity represented the key concern of the participants in relation to social participation. The majority of individuals voiced feeling devalued and disadvantaged because of their disabilities. The participants shared stories of isolation and feeling unworthy in different aspects of their lives:
I have been judged because of my disability. In my last year of coaching I was told that because I have a mental illness, I’m not competent for coaching... I coached for eleven years, and being told that all of a sudden… it hurt me a lot and that was a big barrier there because they basically told me, we don't want you because of your disability.(DSA08, Female – age 38)
During the previous five years I’ve had done relatively nothing. I’ve been confined to my home for most of the time… I felt like I was not unworthy… I felt like somebody buried alive…I want to get out, I want to be part of society … I have become so incapacitated over the last five years. I don't even know if I would be any good if I had the means to be able to participate in anything.(DSB01, Male – age 54)
It made me feel angry because a person without a disability can get what he or she so desires, but then a person with a disability is pushed into a corner and their rights are violated and they’re basically not allowed to enjoy a quality of life that they deserve. (DSB06, Male – age 52)
Three in four individuals also shared stories of exclusion or lack of accessibility in situations involving cultural, political, recreational and social aspects of their lives. Specifically, many of the reports evolved around barriers to physical environment, particularly public transportation, leading to isolation and difficulties in daily life activities:
Right now I’ve been experiencing difficulties with transportation, and just getting around the city. It’s difficult even to get groceries. (DSB05, Female – age 43)
I don't think we are as accessible as we should be. We should be making requirements for any new business that starts up. They should have accessible ramps and doors. (DSC08, Female – age 36)
In a wheelchair accessible home… when the doors are wider you get to access the bathroom. Here, I can’t get into the bathroom with my wheelchair, and I really can’t get in through any of the doors. (DSB01, Male – age 54)
Being disrespected in own experiences and feeling labeled and stigmatized because of disability represented another common theme emerging from the interviews. Much of this was fuelled by a lack of understanding about disability from those without disabilities, leading to discrimination:
I even find relationships very difficult because a lot of people don’t understand people with disabilities. I found the social aspects, even with friends, very difficult. Sometimes I don't hear properly and that can be very frustrating too because if you don't hear something and you say something to someone then you could be laughed at and made fun of. (DSD04, Female – age 37)
There is such a level of fear around mental illness. I can’t even believe it. People have such a lack of understanding… and who wants that label? (DSA04, Male – age 49)
Half of the participants in this study felt discriminated against in various social aspects of their lives. As one participant stated, those situations of discrimination so often encountered in the lives of persons with disabilities convey fear and insecurity:
For the past five years, due to my injuries and disabilities, I personally limit my exposure to the outside world to places where I can feel safe. Otherwise I have already been introduced into the realm of social prejudice and discrimination throughout the whole system of court, doctors, lawyers… so for that reason I stay within the confines of where it’s safe. (DSE05, Male – age 58)
Income security and support services
The domain of income security and support services involves experiences related to access and denial of services and supports essential to an independent living. This domain is particularly important to the group interviewed, given that many of these individuals face barriers to employment. One in three participants did not have a job, despite the fact that over half of the participants have attended some form of post secondary education (Table 5). Without adequate supports and income, people with disabilities may face poverty, exclusion and numerous other barriers to equal participation.
Interestingly, half of the participants reported access to needed supports, including devices and various disability-specific services. In general, the interviewees expressed satisfaction with government benefits programs and supports from non-profit:
I have a pension which is subsidized by social services. (DSC04, Female – age 65)
Right now I have a homecare worker. She has been with me since I had my brain operation, but for 3 hours a day… She comes in and she does my personal care (DSD01, Female – age 63)
| Principles | Number of Persons | Percentage (%) |
|---|---|---|
| Total | 37 | 77 |
| Dignity | 7 | 15 |
| Lack of Dignity | 23 | 48 |
| Self-Determination | 5 | 10 |
| Lack of Autonomy | 8 | 17 |
| Inclusion and Accessibility | 24 | 50 |
| Exclusion and Lack of Accessibility | 15 | 31 |
| Non-Discrimination and Equality | 1 | 2 |
| Discrimination and Inequality | 9 | 19 |
| Respect | 2 | 4 |
| Lack of Respect | 4 | 8 |
At the same time, one in three participants reported lack of access to adequate supports and services. People’s stories emphasized barriers to home care support or lack of financial means to purchase needed equipment and devices:
I had to fight for the funding… I had to go for re-testing for my learning disability. I had to go through a psychologist... because I needed more proof for my learning disability (DSD04, Female – age 37)
My recreation time and my ability to enjoy things right now is very limited because I find difficulty accessing grocery stores, medical appointments with supports, recreational events and other things that are basically out of the question… both transportation and access to support services… (DSB05, Female – age 43)
They just refused to accommodate me, which did not make any sense. I have a manual wheelchair. Workers compensation never even paid for that… I’ve received nothing…my family even had to buy me a manual wheelchair, and I asked them for a bed.(DSB01, Male – age 54)
Nearly half of the participants shared stories of feeling disrespected and devalued when receiving or trying to get access to needed services. Participants voiced their stress and frustration in their encounters with the supports system, in most of the cases feeling powerless to make any change:
In one year we lost everything. I lost my home…when that fell apart, I fell apart. I rock bottomed, where I stayed and have been…confined to the home ever since, despite many attempts. According to the medical community workers compensation, who was supposed to provide me with a motorized wheelchair and a wheelchair accessible van…the never did. They didn’t make the home wheelchair accessible… they did nothing and basically left me like someone in solidarity confinement and I’ve been that way ever since….I was very angry for a long period of time. (DSB01, Male – age 54)
The social work system is not supposed to be like this. These social workers are supposed to help their clients out of situations, not make it worse than it already is. It’s so bad. I’m so stressed out… (DSB10, Male – age 39)
I’m living in the senior’s home, and I’m disabled, and all I get right now is a very small piece of welfare every two weeks. A while back, Canada pension… wrote a letter saying that the only thing I was getting from them was $147 dollars ...so basically that's my life down here in Newfoundland. That's all I get… it makes me feel neglected. It makes me feel that no one wants to help me. Nobody cares... every time I’ve tried, I have lost… that’s the way it is. (DSD01, Female – age 63)
Work
The domain of work entails experiences related to access, retention and progression in the labour market. Three in four participants shared experiences, both positive and negative, in relation to work. Most of the stories evolved around lack of dignity, exclusion, discrimination and inequality (Table 6). Almost half of the interviewees reported feeling undervalued and discouraged about poor treatment they encountered in the employment context.
| Principles | Number of Persons | Percentage (%) |
|---|---|---|
| Total | 36 | 75 |
| Dignity | 14 | 29 |
| Lack of Dignity | 22 | 46 |
| Self-Determination | 3 | 6 |
| Lack of Autonomy | 6 | 13 |
| Inclusion and Accessibility | 15 | 31 |
| Exclusion and Lack of Accessibility | 22 | 46 |
| Non-Discrimination and Equality | 2 | 4 |
| Discrimination and Inequality | 14 | 29 |
| Respect | 4 | 8 |
| Lack of Respect | 9 | 19 |
Participants with invisible disabilities confronted with demeaning attitudes of their employers and co-workers, making them vulnerable to exclusion and discrimination. For example, one individual spoke of the challenges associated with the lack of understanding of mental health issues at the workplace:
I think when you have somebody who has a disability that's invisible, especially around mental health, it’s very difficult to pin point… there are situations at work that I feel not included because I think that people don’t understand mental health issues… it’s very difficult when you have a mental health issue… there is a lot of blame from employers. Employers and coworkers say that they understand mental health as a disability, but they don't… I am afraid to have my performance review because the last time I had one, it was the most disgusting experience I have ever had in my life in a workplace. (DSB02, Female – age 49)
Limited education, as well as limited opportunities given the small size of the province, were also identified as obstacles in finding a job:
I have tried going on job banks and stuff like that, but I don’t have any trade so they won’t let me” (DSB07, Female – 28 years old).
I have done some art work from my home but I think because Newfoundland is such a small population I don’t think I have been able to advance my art work” (DSC05, Male-age 48)
Nearly half of the persons with disabilities in this study encountered various barriers at the workplace or couldn’t access the labour market because of the lack of accessibility:
The barrier was having to give up my work because I couldn’t continue on walking stairs, carrying things, and moving, that was a barrier… we had no escalators or elevators; everything had to go from the first floor to the fourth if you had a room to clean. You carried all your supplies with you. Sometimes you had to make two or three trips because the stuff was too heavy to carry in one try. (DSE02, Female – age 55)
Many individuals reported incidents of discrimination in the workplace, where they were treated differently than their able-bodied counterparts. This presence of ableism in the employment sector often leads to exclusion from the labour market:
I’m really tired of people without disabilities making decisions for people with disabilities… strangers making the decisions that affect my life and the lives of other people with disabilities. (DSA04, Male – age 49)
There is a tremendous amount of discrimination that goes on… it’s not easy having a mental illness and competing against people who don't. Because when you’re in the workplace you are competing against people who don't have metal illness and you’re supposed to be just as good as them and that's difficult. (DSD06, Male – age 42)
I feel that employers can be very judgmental and very prejudice. If you tell them that you have a disability, you’re not going to get hired…you’re not going to get. I have tried that approach before and I wasn’t able to get a job, so I went with the other approach of not saying I had a disability and then I got the job. (DSD04, Female – age 37)
Health, Habilitation and Rehabilitation
Access to services of good quality is an essential aspect of the lives of people with disabilities. This domain entails participants’ experiences in dealing with health care practitioners and in accessing various health-related services. Table 7 summarizes the results of this study in relation to health domain.
| Principles | Number of Persons | Percentage (%) |
|---|---|---|
| Total | 34 | 71 |
| Dignity | 6 | 13 |
| Lack of Dignity | 23 | 48 |
| Self-Determination | 7 | 15 |
| Lack of Autonomy | 7 | 15 |
| Inclusion and Accessibility | 13 | 27 |
| Exclusion and Lack of Accessibility | 19 | 40 |
| Non-Discrimination and Equality | 1 | 2 |
| Discrimination and Inequality | 9 | 19 |
| Respect | 2 | 4 |
| Lack of Respect | 13 | 27 |
Most of the participants experienced ill-treatment in health settings, leading to feelings of worthlessness and powerless:
The hospital system is pathetic. I was dealing with pneumonia and they wouldn’t feed me. They didn’t want to help me use the bathroom. They wouldn’t use the lift and they wouldn’t lift me. They wouldn’t turn me. They wouldn’t move me. I’m supposed to take in all this food and fluids because I have pneumonia, but I can’t eat, can’t drink, and can’t use the bathroom. I’m supposed to be moved every so many hours and I can’t do that on my own, but they won’t send anyone in to do it... they think that because I’ve got a disability, if they touch me they will get the disease. (DSA10, Male – age 40)
I feel frustrated. I feel hurt, I feel betrayed and I feel that the health care system should come and save me for all the trouble that I endured and that I have been forced to put up with… I see nothing but barriers and more barriers that we try to take down, but the health care puts more in the way… I was pushed away like yesterday’s garbage. (DSB06, Male – age 52)
I have been discriminated against the most in mental health system itself. They have done the most damage to me… It was horrible. The things that I went through then are still probably happening to people. You know people are still being injected with needles and not told what the needles are for, and people are still being restrained, and people are still being overmedicated, and all these things continue to happen… (DSD06, Male – age 42)
Many participants also reported various barriers in their attempts to access the health care system which prevented them from receiving the services they were entitled to on an equal basis with their counterparts without disability:
Hospitals are a nightmare, believe it or not. I find that the newer ones are better than the older ones, but the older ones… I can’t even go there. What always amazes me about a hospital is that they can have a big door – 48 inches – into a room to get in, but yet the bathroom door might be 24 inches. It’s ridiculous. (DSE04, Female – age 48)
It’s difficult to get help accessing medical services, like doctor’s appointments, tests, and these types of things. (DSB05, Female – age 43)
In a number of instances, individuals also felt stigmatized and their concerns not being taken seriously because of their disabilities. The negative attitudes and assumptions made by practitioners about disability also contributed to the participants’ feelings of disrespect:
I have chronic pain. I have gone to doctors or emergency rooms with chronic pain, and they see that mental illness or depression is written on the chart and make certain assumptions… so you’re not taken seriously. (DSB02, Female – age 49)
I find the regard of people who work in hospitals – nurses, doctors, and physiotherapists – have a real problem with listening and hearing what a person with a disability says when they’re admitted to a hospital… (DSE04, Female – age 48)
Privacy and Family Life
This domain encompasses participants’ experiences in their private lives and their interactions with family members. Personal relationships represent an important facet of people’s lives. Interestingly, many of the reported experiences in this area were positive.
| Principles | Number of Persons | Percentage4 (%) |
|---|---|---|
| Total | 11 | 23 |
| Dignity | 15 | 31 |
| Lack of Dignity | 10 | 21 |
| Self-Determination | 2 | 4 |
| Lack of Autonomy | 0 | 0 |
| Inclusion and Accessibility | 17 | 35 |
| Exclusion and Lack of Accessibility | 2 | 4 |
| Non-Discrimination and Equality | 1 | 2 |
| Discrimination and Inequality | 2 | 4 |
| Respect | 1 | 2 |
| Lack of Respect | 3 | 6 |
- Note #4
- These categories are not mutually exclusive as each participant could report up to three different situations, and each situation reported could involve both negative and positive experiences. The percentages throughout this section are calculated on the basis of the total number of interviewees. The total in each table indicates the number of participants who reported experiences related to a specific domain considered in the study.
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Many participants reported positive experiences in their family relations, about one in four interviewees feeling included and supported by their family members. These people felt valued and strongly supported by their families who sustained them emotionally and materially:
My wife… had approval from the hospital to take a year off with no pay to come in and accommodate me in rehabilitation at the centre. (DSB01, Male – age 54)
When I was struggling to find employment, when I first started out, my mother made a lot of calls. She advocated for me a lot. (DSC08, Female – age 36)
My family doesn’t see me as somebody with a disability at all… to your friends and your family who know you it doesn’t matter that you have a disability because it’s part of who you are. (DSD09, Female – age 43)
One participant spoke of the importance of educating those from the close network as key factor to strength the relationships with those from this network:
My husband, once he understood that I was in pain and that it was real, had no complaints and helps out with everything and anything…I think the important thing with your family, if you want them to understand, is that you have to give them the information… so with my husband, I’m really mindful to take him to appointments and give him the information… because if he doesn’t know about it, how can I get mad at him for not understanding? (DSB08, Female – age 38)
Similarly, about one in three participants felt valued in their families, emphasizing the support and sense of security received from family members:
My mother is really great. If not for her, I don't know what I would do.(DSB07, Female – age 30)
In contrast, one in five participants shared stories of feeling misunderstood, devalued, and, in some cases, left by the closest persons once acquiring disability:
With my husband, that's one thing that causes a lot of friction with us. He doesn’t understand the amount of pain… a couple of weeks ago I was home and I was having pain in my chest… I ended up speaking with this nurse and they tried to calm down my breathing and she said… you need to go to emergency, and my husband had made me feel so bad about going to emergency over the past few months that I didn’t want to go. (DSA06, Female – age 43)
My wife refused to help me and she divorced me. (DSE05, Male – age 58)
Education
The domain of education encompasses personal experiences in the interaction with the education system. Participants reported various negative experiences in relation to education, mainly stemming from the lack of needed accommodations (Table 9).
| Principles | Number of Persons | Percentage (%) |
|---|---|---|
| Total | 18 | 38 |
| Dignity | 1 | 2 |
| Lack of Dignity | 12 | 25 |
| Self-Determination | 2 | 4 |
| Lack of Autonomy | 2 | 4 |
| Inclusion and Accessibility | 10 | 21 |
| Exclusion and Lack of Accessibility | 9 | 19 |
| Non-Discrimination and Equality | 0 | 0 |
| Discrimination and Inequality | 6 | 13 |
| Respect | 0 | 0 |
| Lack of Respect | 6 | 13 |
Many stories evolved around the lack of accessibility of the education system, participants experiencing discomfort and discouragement in pursuing their education prospects:
With regards to the education… they didn’t include me, they undervalued me, they disrespected me, treated me like I didn’t know what I was talking about, basically like an imbecile. In the first field placement I was into, the university expelled me. (DSB05, Female – age 43)
I have tried to get education before, but I found university wasn’t accommodating…even though the school is accommodating, you can feel that you are separated because you’re labeled. I needed to have a note taker and one wasn’t provided outside of school so… one of the students in my class was the note taker… and I’m even older than the students so that made me feel really uncomfortable to have another student teach me. (DSD04, Female – age 37)
The fire drill was the worst day… they had to keep someone with me because I had to stay by the front doors over there and then they said there was a fire. How were they going to get me out of there? They would have to lift me in my chair down more than three flights of stairs to get me outside…. there is no accessibility. I don't think it should be allowed. (DSB04, Female – age 34)
Many stories emphasized ableism in school life, leading to stigmatization and discrimination of persons with disabilities in their encounters with the education system:
Now in the education system there is discrimination… I was in social work for eight years and I had to fight for four years to get a right that everybody else had automatically.” (DSB05, Female – age 43)
The system that normal people go through, they are treated differently than people with disabilities. I mean the fact that they can get funding within three months, and it took me two years. That is unacceptable. (DSD04, Female – age 37)
Indirectly, they think I’m dumb. They think I’m stupid. (DSB05, Female – age 43)
Lack of access and exclusion was particularly emphasized by persons in deaf community in their attempts to get their needs accommodated and, at the same time, facing the negatives attitudes of some of the instructors:
…the teacher was hearing, and I couldn’t really grasp the communication. I couldn’t understand a lot of what the teacher was saying and I did not have an interpreter at that time… I had no supports. (DSC05, Male – age 42)
There was one incident where a professor refused to wear a deaf system and he said that it would interfere with his teaching. (DSC08, Female – age 36)
At the same time, positive stories of inclusion in the education system were also reported, some of the interviewees emphasizing the improvements being made to support students with disabilities:
As far as post -secondary education, they have come a long way. They are stepping up quite a bit… the classes have actually been slowed down to make sure that [he] is not falling behind at all, to make sure he completely understands what they were doing. (DSC09, Male – age 25)
Information and Communication
Information and communication might be an area of particular concern for persons with disabilities as usually the communication venues are not adapted to facilitate full access to information. This domain wasn’t identified as key by the participants in this study, only one in four participants reporting experiences around information and communication (Table 10).
| Principles | Number of Persons | Percentage (%) |
|---|---|---|
| Total | 11 | 23 |
| Dignity | 0 | 0 |
| Lack of Dignity | 4 | 8 |
| Self-Determination | 0 | 0 |
| Lack of Autonomy | 1 | 2 |
| Inclusion and Accessibility | 3 | 6 |
| Exclusion and Lack of Accessibility | 8 | 17 |
| Non-Discrimination and Equality | 0 | 0 |
| Discrimination and Inequality | 2 | 4 |
| Respect | 0 | 0 |
| Lack of Respect | 0 | 0 |
Exclusion and lack of accessibility emerged from most of the stories which evolved around the lack of support participants needed in order to participate in various aspects of live:
I need this voice program, which costs a bit of money. If I can’t get the employer covered with that, then it’s a real turnoff for them. Then the computer system itself – whether or not it’s accessible – that's another barrier. (DSE01, Female – age 38)
The airport really bothers me that it is not hearing accessible... announcements are on the PA system and I have no clue what they’re saying… there is no written sign… there is no close captioning. Let’s say there is a change in the gate number, I wouldn’t get that…. I don't even know if I could possibly travel alone. I don't know if I could. I suppose I could manage it, but it would be very stressful. (DSC08, Female – age 36)
The lack of information in accessible formats or lack of adequate supports responsive to people’s communication needs lead in most of the cases to feelings of frustration, discouragement, and disrespect:
The other biggest barrier for me, that’s frustrating, is inaccessible materials – which is the CNIB’s responsibility because I need material… I’ve usually got to have somebody read it to me because I never have anything available to me. If they are passing out stuff, it’s always just written, or I have to ask them to e-mail it to me. There is no consideration. Even beforehand when I go to workshops and stuff that I’ve been to, they ask you ahead of time if you need any accommodations, and what format you want it in. Many times have I responded to that request, and it has not been available in my format... that's frustrating and not acceptable… I have to get someone else in the group or someone next to me, or ask the host, to read it to me. That's what I usually get them to do. I get them to read it. They don't make it available to me in Braille or electronically ahead of time so that I can read it instead of being put on the spot when I get there… (DSE01, Female – age 38)
Access to Justice
The justice system is an important channel through which people with disabilities can assert their rights. This domain involves people’s experiences in their interaction with the legal system in a broad sense, including status before the law and access to the court system, as well as liberty and security of the person.
| Principles | Number of Persons | Percentage (%) |
|---|---|---|
| Total | 11 | 23 |
| Dignity | 0 | 0 |
| Lack of Dignity | 9 | 19 |
| Self-Determination | 1 | 2 |
| Lack of Autonomy | 2 | 4 |
| Inclusion and Accessibility | 0 | 0 |
| Exclusion and Lack of Accessibility | 5 | 10 |
| Non-Discrimination and Equality | 1 | 2 |
| Discrimination and Inequality | 2 | 4 |
| Respect | 0 | 0 |
| Lack of Respect | 2 | 4 |
One in five participants reported feeling devalued as a result of poor treatment in interacting with the legal system and its representatives. For example, some stories highlighted the lawyers’ lack of understanding of disability and the difficulties to get their support with the legal process. In essence, the interviewees shared a common feeling of loneliness in their attempts to claim for their rights, with no hope for aid from the agents of the justice system:
I went to several lawyers in Newfoundland…they said I had no rights at all. I had to take it outside of Newfoundland into a disability organization, and get them to organize. When I asked them for an opinion on it, they told me to bring it back to human rights… which I did. I brought the issues back to human rights and when I… explained the problems… in terms of accommodation, such as transportation, the washroom, and all of those types of things… the human rights said no… (DSB05, Female – age 43)
The most highlighted was talking to a lawyer. He didn’t understand the nature of my disability and how it affects me, and he got quite angry after reading five minutes of paper work without me following along… so while instructing him to be a little more aware of what's going on with me and my disability, he just couldn’t grasp it and I had to get angry with him. I had to literally tell him that he lacks the skills necessary to understand what my disability is and how it affects me… (DSE05, Male – age 58)
I actually went to a lawyer… and I ended up getting nothing out of it... I couldn’t get workers compensation because the company was such a big company. I think the lawyer got scared off and probably paid off. (DSD04, Female – age 37)
Participants also expressed an overall distrust in the legal system and law enforcement, this being the main reason they wouldn’t look for a formal action to get their rights protected:
Legal aid… they just made a half hearted attempt… I had no legal support. (DSE05, Male – age 58)
Six months after the damage is done, I’m supposed to press charges. I waited probably eight months and then it’s six months before the restraining order…. it doesn’t seem right…it’s the justice system I guess. (DSE08, Female – age 27)
Intersectional Analysis
In this section, the exercise of rights by people with disabilities was explored in relation to gender and age5 to provide a better context of people’s experiences. Important to note, this study involved slightly more females than males, as well as a higher number of individuals between the ages of 35 and 54, while the age groups of 18-34 and 55+ being less represented. The distribution of the participants in this study according to age and gender is summarized in the table below:
- Note #5
- Analysis by type of disability was not possible due to small cell sizes once disaggregating by various types of disability reported by participants in this study.
- Return
| Gender | Age | ||||
|---|---|---|---|---|---|
| Male | Female | 18-34 | 35-54 | 55 and over | Unassigned |
| 21 | 27 | 9 | 30 | 8 | 1 |
The Impact of Gender
When exploring how gender affects the human rights experiences of men and women in the eight domains of life considered in this study, interesting differences were found in relation to two of these domains - Privacy and family life and Income security and support services (Table 12). There were more women discussing privacy and family matters than men, whereas more men than women discussed issues related to income and support services.
Interesting to note, certain areas such as Social participation, Health, and Work were similarly addressed by both men and women, denoting their equal importance in people’s lives, regardless of gender.
| Domains of Life | Female | Male |
|---|---|---|
| Total | 27 = 100% | 21 = 100% |
| Social Participation | 96% | 95% |
| Income Security and Support Services | 81% | 48% |
| Work | 70% | 67% |
| Health, Habilitation and Rehabilitation | 19% | 24% |
| Privacy and Family Life | 78% | 71% |
| Education | 70% | 81% |
| Information & Communication | 33% | 43% |
| Access to Justice | 19% | 24% |
Women’s and men’s experiences were also similar in relation to their access or denial of human rights principles (Table 13). However, a particularly striking contrast was noticed under the principle of Respect for difference, where significantly more women reported negative experiences than men, which may link to multiple forms of discrimination experienced by women.
| Principles | Female | Male |
|---|---|---|
| Total | 27=100% | 21=100% |
| Dignity | 93% | 67% |
| Lack of Dignity | 93% | 100% |
| Self-Determination | 48% | 29% |
| Lack of Autonomy | 48% | 57% |
| Inclusion and Accessibility | 89% | 95% |
| Exclusion and Lack of Accessibility | 85% | 90% |
| Non-Discrimination and Equality | 11% | 19% |
| Discrimination and Inequality | 77% | 81% |
| Respect | 30% | 24% |
| Lack of Respect | 85% | 5% |
The Impact of Age
In this study, the impact of age on participants’ experiences across the eight domains of life was also examined. Given that there were significantly more participants in the age group of 35-54, we need to look at the percentage distribution within each age group (Table 14).
| Domains of Life | 18-34 | 35-54 | 55+ |
|---|---|---|---|
| Total | 9 = 100% | 30=100% | 8=100% |
| Social Participation | 100% | 97% | 100% |
| Income Security and Support Services | 78% | 67% | 63% |
| Work | 56% | 70% | 88% |
| Health, Habilitation and Rehabilitation | 22% | 13% | 50% |
| Privacy and Family Life | 78% | 80% | 63% |
| Education | 78% | 80% | 63% |
| Information & Communication | 67% | 33% | 25% |
| Access to Justice | 22% | 20% | 25% |
Younger participants (18-34 and 35-54 age groups) reported their human rights experiences in the domain of Education more often than the older interviewees. This may be explained by the greater relevance of this domain in the lives of younger people, given that they are more connected to education at this stage of their lives. In contrast, the domain of Health was discussed more by mature participants (55+ and 35-54 age groups), indicating its greater importance at this stage in life.
| Human Rights Principles | 18-34 | 35-54 | 55+ |
|---|---|---|---|
| Total | 9=100% | 30=100% | 8=100% |
| Dignity | 89% | 83% | 75% |
| Lack of Dignity | 100% | 97% | 100% |
| Self-Determination | 22% | 43% | 50% |
| Lack of Autonomy | 67% | 43% | 75% |
| Inclusion and Accessibility | 89% | 87% | 100% |
| Exclusion and Lack of Accessibility | 89% | 87% | 100% |
| Non-Discrimination and Equality | 11% | 13% | 25% |
| Discrimination and Inequality | 89% | 83% | 63% |
| Respect | 33% | 27% | 25% |
| Lack of Respect | 89% | 83% | 63% |
Regarding the human rights principles, there were few differences noted across the age groups (Table 16). Within this sample, it seems that age was associated with experiences of self-determination and inclusion, the proportion of positive reports increasing with age. In contrast, the experiences of discrimination and lack of respect were more frequent among younger interviewees. Reasons for this contrast may be grounded, in part, in the general belief that disability represents a natural facet of senior life, whereas more prone to stigmatization when experienced at earlier stages in life.
Analysis based on participants’ responses to discrimination
Systemic Roots of Discrimination
Systemic roots of discrimination comprise of various social, legislative and economic factors that lead to discrimination on grounds of disability. Throughout the interviews, respondents reflected on their experiences within a broader socio-economic context that impacts their exercise of rights. Findings are summarized in Table 16.
More than half of the interviewees highlighted economic factors as a primary systemic root of discrimination, many people with disabilities living in poverty and being deprived of a decent standard of life:
“I can’t do anything. Other people… I could see somebody going up there and maybe going to a movie or up to a dance or going somewhere and I say, I’d like to do that or even go too. I don't go to an amusement park or anything that you have to pay money to see… I wish I could go in there, I wish I could do that, but I can’t because I don't have the funds to do it.” (DSD01, Female – age 63)
“I don't know if I would have the finances, I don't have the ability to keep the house going… most of the housing is subsidized. Where I’m working I do earn a good wage so I don't know how much of that is taken, and how much rent I would have to pay. I heard that people who live in subsidized housing, if they work and make a decent wage, the rent goes sky high on some of these units. How much of a struggle would I have to put up if I needed anything done? How much would I be paying for a housekeeper to come in and do some house cleaning for me? Maybe give me some assistance with cooking meals… I wouldn’t want my disability supports to become a disincentive to going to work because that’s very important to me…” (DS02, Female – age 35)
| Number of Persons | Percentage (%)6 | |
|---|---|---|
| Total | 34 | 71 |
| Economic | 31 | 65 |
| Social | 7 | 15 |
| Legislative | 8 | 17 |
- Note #6
- Since each respondent may have reported up to three different incidents, percentages were calculated on the basis of the whole sample and do not sum up to 100%
- Return
The poor socio-economic status of most of the people with disabilities was also identified as a significant barrier to get access to the justice system as one of the interviewees stated:
“I’m very well sure that if I had the money to throw at a lawyers pocket, that he would do anything I asked him to do with due diligence. However, when you are poor, and you cannot afford a lawyer … you are left completely and utterly without a voice, marginalized, ignored… the legal support, I didn’t have because I didn’t have the money and legal aid…” (DSE05, Male – age 58)
Responses to Abuse and Discrimination
This section summarizes the findings of the analysis based on the interviewees’ responses on their own actions when facing discrimination. A wide spectrum of responses was provided. Some chose to distance themselves from the contexts in which they have faced discrimination in order to avoid further discrimination; others resisted by trying to change the situations and contexts in which they have experienced discrimination; and the majority reported the discrimination to a local authority or had taken legal action. Results of this analysis are presented in Table 17.
| Response to Abuse & Discrimination | ||
|---|---|---|
| Response | Number of Persons | Percentage (%) |
| Total | 27 | 56 |
| Avoid and seek distance from the discrimination | 10 | 21 |
| Choose to return to the situation to try to change it | 5 | 10 |
| Choose to return and complain about the situation | 15 | 31 |
One in three participants decided to report or file an official complaint in their encounters with situations of abuse. In some cases, it led to improvement, while in others the official action didn’t make any difference:
“I had done a training program and I met a woman there and she… told me that it shouldn’t take that long for me to get my funding and that I should write to my MP. So I actually had to do that, and within three days of writing the government, I got an answer back from the head person in EI and he said my funding was going to go through.” (DSD04, Female – age 37)
“I’ve wrote numerous letters to the judicial system and to the ministers of justice… it’s very difficult to be able to effectively carry on communication and get this to a point where no other Newfoundlander has to experience this.” (DSE05, Male – age 58)
In a number of instances, the participants decided to advocate for themselves to get their situation improved. One participant described the risks and difficulties that can arise with self-advocating:
“Being an advocate in university, it can get you in a lot of trouble…I advocated with the university, and with some help from some other people, to try and get automatic doors put in. I learned a lot because you need to have respect for policy, and how to create new policy, and how to make it work and maintain respect for the systems that are already in place. The difficulty is how it’s perceived by those on the other side that can impact you and negatively affect how you get work in the future, because it labels you as a trouble…” (DSD09, Female – age 43)
On the other hand, many participants chose to avoid or distance themselves from the contexts of abuse or ill-treatment, general perception being that the official action will not change their situation.
“There’s a lot of politics when you’re trying to change things… it’s not easy. It can be exhausting.” (DSD02, Female – age 35)
Reasons for Not Reporting
This study also explored the reasons why the participants decided not to report their experiences of abuse or discriminatory treatment. A variety of reasons were reported by the interviewees from the belief that nothing would have happened as a result of their action to the fear of consequences (Table 18).
| Response for Not Reporting | ||
|---|---|---|
| Reasons | Number of Persons | Percentage (%) |
| Total | 13 | 27 |
| Nothing would have happened | 5 | 10 |
| Lack of Access | 4 | 8 |
| Fear | 6 | 13 |
| Lack of Financial Means | 0 | 0 |
| Corruption | 0 | 0 |
| Self-Blame | 0 | 0 |
| Other | 4 | 8 |
Most often, the participants did not report instances of abuse or discrimination because of fear. These interviewees reported being afraid of the consequences of their legal actions given the risk to be punished for these actions:
“I don't want to jeopardize myself any further than I am. You understand what I’m saying? If I make stuff public, it could make it even worse.” (DSB05, Female – age 43)
“So what happened is that they pulled all the articles and I got called into the student dean’s office and basically told I had to be very, very careful because… people are watching me and it will impact my job… and it will impact my ability to get a job in the future for what I was doing.” (DSD09, Female – age 43)
“I didn’t report it any further because I felt, at that moment, when somebody said no, you can’t get another person to help you do this, I just felt that by going over that person’s head it might of caused more trouble than what it was worth. I just put my back against the wall and said I wouldn’t ask anymore for anything.” (DSE02, Female – age 55)
Second to “fear” as a reason for not reporting, participants also voiced the feeling that nothing would change as a result of their actions. As a result, they chose not to take action.
“They can’t do anything about it, I don't think.” (DSA02, Male – age 66)
“I never got any response…sometimes I’ve got some question for human resource reporting, but I never got any improvement or answers from them.” (DSC03, Male – age 60)
In addition to a general sense that reporting or taking legal action against ill-treatment will not result in any change, there were some participants who pointed out the lack of access to appropriate information, as well as the lengthy and complicated system in place that discouraged most people to take action.
“I didn’t report it to anybody because I didn’t know who to report it to…. there was no building manager there or anything like that.” (DSD02, Female – age 35)
“The human rights commission… the ability to make society accountable for human rights violations against people with disabilities is so long and drawn out that most people with a disability… just let it go.” (DSD09, Female – age 43)
Recommendations from Interviewees
Participants made a number of recommendations to improve the situation and circumstances of people living with disabilities (Table 19).
One third of the interviewees recommended increased social supports as a means to improve the lives of people with disabilities. Specifically, they emphasized the need for better government mechanisms to support and improve the living conditions, income, health care, housing and access to a number of disability-related services for people with disabilities. In essence, steps must be taken to account for the exclusion and discrimination that persons with disabilities encounter on daily basis, leaving them in an unequal position comparing with their able-bodied counterparts. It is often these increased barriers – that people with disabilities face – that make stronger social supports a necessity in order for them to enjoy a fully inclusive and accessible social life:
“I would say that the biggest thing that I would like to see changed is…timely access to health care. That's something we don't have.” (DSB08, Female – age 38)
“Deaf people need more access to interpreters to be able to participate in activities. We need more interpreters for the deaf, and more interpreters need to be hired.” (DSC05, Male – age 42)
“You just don't have the supports and there is not enough. I mean, for someone with a disability there should be more supports. Even just for security for housing… I’m in a situation now where I don't know where I’m going, and I don't know where or if I’m going to end up on the street...” (DSD04, Female – age 37)
| Recommendations | ||
|---|---|---|
| Response | Number of Persons | Percentage (%) |
| Total | 33 | 69 |
| Raise Awareness | 13 | 27 |
| Economic Supports | 7 | 15 |
| Social Support | 17 | 35 |
| Representation | 3 | 6 |
| Respect | 3 | 6 |
| Legislation | 2 | 4 |
Other
|
8 (5) |
17 (10) |
Educating the public about disability and people with disabilities emerged as another important recommendation to improve the situation of the disabled in society.
“You can’t stop the way people think. They’re going to think the way they’re going to think… the only thing that you can really do is disability awareness training, or media promotion…” (DSD02, Female – age 35)
“If you are aware of what's going on, then you can be more empathic. You already have the awareness, but when you have someone in a position of power who has no awareness , you’re fighting a brick wall…. I’m still trying to get people to have awareness.” (DSE05, Male – age 58)
Educating the public about mental health and campaigning against the stigma associated with this disability was recommended as a key component of raising awareness initiatives recommended:
“I’d like to see education in the school curriculum to include sensitivity training about people with mental illness, because I think that that's the last remaining acceptable prejudice in our society…” (DSA06, Female – age 43)
“The whole idea is the lack of understanding about mental illness… you would think that non-profit organizations… or disability organizations should get it… but there needs to be another level of understanding.” (DSA04, Male – age 49)
“I think people in the health care system have to be educated specifically about mental health issues and they have to change their attitudes.” (DSC04, Female – age 65)
Other recommendations included improved accessibility, particularly of the built environment, that is essential to participation in all aspects of life on equal basis with other members of society.
“Anywhere public should be accessible to people with disabilities.” (DSD02, Female – age 35)
“The government should be accessible… everything should be automatic when one walks into a building.” (DSC09, Male – age 25)