Part II - Discussion of findings

Spheres of life and human rights

In the data collection process, eight key areas of life were analyzed with respect to five human rights principles. These areas included: social participation; privacy and family life; education; work; information and communication; access to justice; income security and services; and finally, access to health, habilitation and rehabilitation services.
The following five core human rights principles were considered with respect to each of these areas of life for people with disabilities: Autonomy; Dignity; Participation, Inclusion & Accessibility; Non-Discrimination & Equality; and Respect for Difference.
Social Participation, Income Security & Support Services, and Work were the areas with the highest number of responses. The lowest number of responses were the areas of Access to Justice and Information and Communication (Table 3).

The experiences shared by the participants in this study overwhelmingly report barriers to the exercise of their human rights (Chart 1). The most frequently reported barrier was social exclusion closely followed by instances of discrimination, erosion of dignity and a lack of respect for or recognition of difference.

Chart 1: Experiences reported by human rights principle

Inclusion

76%

Exclusion

100%

Non-discrimination

33%

Discrimination

98%

Positive dignity

55%

Negative Dignity

95%

Respect

48%

Disrespect

93%

Self Determination

67%

Lack of Autonomy

88%

Social Participation

Of the eight areas of life, social participation is clearly the most significant area of concern reported by participants (see Table 3). For the participant, this area encompasses more than simply physical barriers; it also includes participation in cultural and political life, sports, recreation and leisure activities.  In these multiple arenas, individuals with disabilities encounter a myriad of concerns, stemming from difficulties such as barriers to public transportation and the built-environment, and disrespect, and a loss of dignity (Table 5). In many cases, participants experience discriminatory attitudes that hinder their active and equal participation in society, as the following excerpts clearly show:

“They assume you can’t have sex, they assume you can’t go to the bathroom; they assume you’re spinal cord injured cause everyone is spinal cord injured. But the assumptions also work the other way sometimes – if you can do all kinds of things, they expect you to be superhuman and do everything!”(12-06’2008-interview13, Woman – age 55)

“People don’t defer to me… people don’t look to me for guidance. It’s fairly rare that people will actually be rude or outright hostile, but what is so common is… a strange emotion. I mean people are very distant and they seem to be distanced by emotions of their own, that are provoked by coming into contact with someone with a disability. So I find it very difficult to connect with people because it’s hard to get past their emotions around my disability.” (28-08-2008, interview15, Male – age 29)

Note #2

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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False presumptions about what people with disabilities can and cannot do lead to disrespect. Indeed, findings from this study indicate that Torontonians with disabilities often feel victimized and excluded in their social interactions, with their dignity violated. This is particularly the case in situations involving transportation, leisure activities, and other areas of social life, as many interviewees reported:

“We are considered second class citizens when it comes to flying. Somebody else can just walk on and have the same rights as everybody else, it doesn’t matter… who they are. But when you’re in a wheelchair you are categorized.” (12-06-2008, interview13, Female – age 58)

“They are very cruel. I have been bullied my whole life… I am a small guy… I don’t know why they must think that I walk around with a million dollars in my pocket… I get beaten a lot. They try and rob me and stuff like that… They can be quite mean… sure they are only words, but sometimes it can get to you.” (20-06-2008, interview19, Male – age 58)

 “I feel like I always have to make an effort to change people’s perceptions, it’s always there, it’s always an agenda, it’s always something I need to do.”(16-03-2008, interview4, Female – age 51)

 “It’s hurtful. It really is. You really feel that you don't matter. It’s all about people who drive—actually I really feel that this whole thing is all about cars. Every—almost every decision that's made in this city is about cars.” (10-02-2008, interview1, Female – age n.a.)

These quotes illustrate the damaging effects of discriminatory and exclusionary treatment for people with disabilities, who are in a society where many of their needs are clearly not being accommodated.

Work

The area of work emerged as a second area of concern for persons with disabilities in this monitoring study.

In the workplace, a large proportion of participants reported feeling discriminated against, with little opportunity for advancement and professional growth (Table 6). These participants not only feel that their disability directly impedes their access to many sectors of the job market, but they also report encountering marginalization by their co-workers. One interviewee told the following story:

“I’ve applied for director positions. I’m not getting interviews and I’m not sure why.  Even here, there was a director position that opened up and I applied for that and was not even given an interview…I suspect that… there’s some perceptions about whether I have the stamina or whether I’m energetic enough...” (13-03-2008, interview3, Female – age n.a.)

And another stated:

“I don’t think they really value people with disabilities as equals … it’s chronic in the helping professions, people love to help out people with disabilities but, sure as hell, they don’t want to work side by side with them.” (15-06-2008, interview14, Female – age n.a.)

In addition to marginalization, participants feel frustration by being excluded from positions for which they are qualified. One woman confided:

“It makes me feel very bad because I’ve gone to school. I want to work because I am bored. I live alone, but I cannot work. Nobody wants to give me a job...” (20-06-2008, interview18, Female – age 56)

While another said:

“I’ve been looking for work and haven’t managed to get any, which really frustrates me because I know I can work.” (08-22-2008, interview11, Female – age 45)

As a result of this discriminatory treatment, internalized feelings of failure are common amongst individuals who cannot find employment, as one participant observed:

“You lose self esteem, the satisfaction that you’ve done a day’s work. You certainly don't have any money to show for it, so you lose all around.” (12-09-2008, interview19, Male – age 47)

Income Security and Supports

Income security and support services are an important part of life for people with disabilities and are basic circumstances for the enjoyment of human rights.  A number of interviewees shared their experiences about this aspect of their day living situations.
One issue that emerged in the interviews in relation to this area of life concerns the lack of opportunity to make autonomous choice around the provision of disability-related services (Table 7).  Many interviewees reported experiencing a lack of control, and a feeling as though they have little decision-making power or autonomy when dealing with caregivers or relying on adapted public transportation. Some described this as a stifling experience that interrupted their daily activity:

 “I had a lot of problems with that organization, and the quality of service …certainly felt… almost like I didn’t have a right to run my own life” (15-08-2008, interview3, Female – age n.a.)

“If I want to do something on the way home… if I want to stop here and do an errand, I can’t. Wheel-Trans will not do that kind of stuff for you.  I cannot organize to do anything in an evening because all I can do is get home with any certainty.” (13-03-2008, interview3, Female – age n.a.)

Some individuals also commented on the lack of support services for their personal circumstances, and the extent to which they feel systemically marginalized because of that:

“So for myself, I’m in what they call chronic pain most of the time so I need a place to rest. There isn’t such a place provided. It’s not available. Some shelters apparently do, but there is no opening there. What do I do? I lie on a park bench during a day, I have my master’s degree and I lie on a park bench in Toronto.” (12-09-2008, interview19, Male – age 47)

“Until their policies and their way of implementing things change, I think that's where most people are going to run into problems… they’re looking at it in certain parameters and certain barriers that they’ve deemed as the eligibility criteria for whatever and if you don't fall into it you’ve missed the boat.” (26-08-2008, interview14, Female – age 51)

Economic insecurity and denial of appropriate supports prevent many people with disabilities from living independent lives, and taking part in society as equal citizens. This is clearly a denial of their human rights.

Health, Habilitation and Rehabilitation

This sphere concerns experiences related to access to health, habilitation and rehabilitation. In this area of life, interviewees reported experiences of exclusion and of being disrespected or labeled. This was particularly found to be the case of users and survivors of mental health services.  One interviewee reported:

“I have some mental health issues. They don’t always understand that… they label you as crazy instead of just depressed or having post-traumatic stress symptoms. I even had…doctors that quit on me because they couldn’t figure out how to cope with my mood swings… and my anger.” (25-08-2008, interview13, Female – age n.a.)

Participants with mobility disabilities, on the other hand, complained about the lack of physical accessibility in medical facilities:

 “In the doctor’s office I go to, the door’s so tiny that they have to open two doors to get me in… and they don’t have buttons on the doors anywhere. A lot of bathrooms are not accessible for a large scooter… and if they do, usually somebody else is in there that shouldn’t be there, like a mother with a child or something because they sometimes put the changing table in the large bathroom…”  (25-08-2008, interview13, Female – age n.a.)

Thus a range of barriers including the physical inaccessibility of the hospital environment as well as attitudinal barriers on the part of health care professionals resulted in many people having difficulty accessing physician care. Poor access to health services resulting in individuals feeling as though their dignity is compromised, particularly for those with psychosocial disabilities. For example, one interviewee describes the poor treatment she endured, due to lack of control over the care being provided:

“It made me feel like I was a nobody because they didn’t listen; they didn’t want to be kind. They just thought that brutality was the way to treat me and other times they even gave me antipsychotic medicine… when I don’t have any psychotic problems.” (25-08-2008, interview13, Female – age n.a.)

Instances of poor treatment of exclusion and discrimination within the health care system  is something that resonates with the majority of interviewees, many of whom express distress over their encounters with health care professionals and the system as a whole.

Privacy and Family Life

Although this was not widely reported by respondents, data indicates that a few people with disabilities experience a loss of dignity in the realm of relationships and family life experiences. These experiences stem from feeling largely misunderstood as a result of a disability, particularly because of deeply entrenched prevailing attitudes, that cause shame or embarrassment in those who are around or care for the person with the disability.

One interviewee stated:

“Most of my friends are able-bodied and…they thought I was absolutely … mad, I mean they thought I was making it up. I was over-exaggerating. I was not trying… hard enough because that was very much a teacher-parent kind of role. But for my friends, it was more like…maybe you’re just overreacting, maybe you’re being a little too sensitive. I bought into that a lot. They didn’t really get it…” (22-01-2008, interview2, Female – age 28)

Another responded that:

“I had very few ties with my family. I ended up separating from my wife…we got a separation agreement… and I lost contact with my son who was very hostile to me.” (01-21-2008, interview1, Male – age 70).

Some participants also reported feeling disrespected by members of their family. This included disbelief on the part of family members, particularly for those with non-visible disabilities, making it harder for these individuals to identify, as this women experienced:

“My family, my sister thought I was being ridiculous… She was like you’re not disabled at all… Because being disabled meant being physically disabled or having a visual impairment or anything like that. It was not something that people could see… so it was not believable.”(22-01-2008, interview2, Female – age 28)

Those who are (or had been) institutionalized also reported enduring poor living conditions and lack of respect and support in those contexts, affecting their dignity and human rights. Here is one of such testimonies:

“They put me out earlier to a home for special care for five years… homes for special care, they are the bottom of the bottom rank…they are really bad and particularly the one I was in was a farmhouse…just a farmhouse where I slept three in a room with just a rotten mattress… it was just horrible. It was horrible.” (01-21-2008, interview1, male – age 70)

Education

This area includes life experiences that take place either at school or through education experiences. The majority of experiences reported in the sphere of education revealed instances of discrimination, where participants felt that their educational environment was not at all conducive or accommodating to their disability.

“Sometimes I feel really sorry for myself and I pity myself and I think I'm a horrible person… Often especially in a university and in an environment that is not made for people with disabilities.” (22-01-2008, interview2, Female – age 28)

“There have been several times where I have applied for continuing education courses at a fairly advanced level, and have been told by the educational centers that they cannot offer these courses to a blind person.” (NoCode_2, Male – age 45)

These quotes are suggestive of the damaging effects of poor accommodation and support mechanisms that leave individuals feeling as though they are being targeted and excluded from their rightful access to education because of their disabilities. In many instances, individuals feel that the blame is placed on them for their experiences, rather than being perceived of as a systemic deficit in the education system itself. One interviewee noted
 

 “if someone… said something to me in school, and I had received the help I needed in school,  then I would not have been in the predicament I was in, where I was feeling suicidal and depressed. I mean, just getting that help earlier on and people believing me would have been really helpful.”(22-01-2008, interview2, Female – age 28)

And yet another commented:

 “I was told that I demanded a lot. I had a lot of expectations cause I did not understand the work and I was very lost in the classroom. Things were happening that I didn’t process very well… so this professor made me feel terrible and I ended up crying in her office.” (22-01-2008, interview2, Female – age 28)

Lack of accommodation and failure to provide appropriate supports at school prevent many persons with disabilities from learning. This breach of their human rights may well compromise their future.

Information and Communication

A number of individuals in this study – particularly with sensory disabilities - report experiencing difficulties and barriers with respect to information and communication. They include limited availability of Braille texts, visually inaccessible Internet websites, and the lack of sign language interpretation or real captioning services that act as barriers to access to information and limit opportunities for social participation on an equal basis with other people.

The following are examples of the stories gathered which show the range of barriers people with disabilities face in this area:

“It’s basically the biggest frustration that you have things on television...that does not have accessibility like captioning on commercials… our lives are worth zero because they didn’t take the time to caption.” (28-08-2008, interview15, Male – age 56)

“When you’re vision impaired and you try to use a computer, which I do, there are sites you can’t access because we can only use the tab keys and arrow keys to access information. We can’t use the mouse, so very often you go on a site and it will read probably the heading, but then you try to arrow down and the cursor won’t hit the place and so it won’t read it to you… So going on websites is difficult.” (22-08-2008, interview11, Female – age 38)

“I think the federal government should be ashamed of itself because they put everything online and we are a sector of the population who can’t access that information, and then they wonder why so many of us have no jobs.” (22-08 2008, interview 11, Female – age 38)

In the era of technology in which we live, some participants noted that their life experience is restricted because of the lack of efforts made to adapt technology to a broad range of needs. As a result, they are unable to enjoy the same lifestyle or complete daily tasks with the same ease as their able-bodied counterparts, as these interviewees observed:

“We are gradually overcoming the whole use of what technology can do for people with disabilities. You know there’s still some out there who say that… unless you can read the printed word… there’s no other way of demonstrating literacy… but that is an ableist way of looking at the world.” (20-03-2008, interview6, Male – age 50)

“They’ve been telling me since I moved in that they’re going to put Braille on the washers and the dryers. Nothing has happened.  You must be kidding if they’re ever going to spend a dime, because you’re vision impaired, to help you.” (08-22-2008, interview11, Female – age n.a.)

Unable to access information that is available to the general public and prevented from taking advantage of available technological progress (because of the lack of universal accommodation and adaptation), Torontonians with disabilities can’t help but feel excluded and marginalized.

Access to Justice

While participants in this study did not frequently report issues related to access to justice, interviewees who did expressed a general distrust of the legal system. The majority of interviewees who reported encounters with the justice system identify themselves as having a psychosocial disability. For many, there is a stigma associated with people with disabilities in the prison system and therefore they experience isolation and feel ostracized because of their disability. One participant communicated that:

“They don't believe that people are recovering or ex-convicts or… once they know who you are it must be written in the computer… so they treat you with no respect.” (12-09-2008, interview17, Male – age 46)

“Even in court, when they told me to go to a judge to get a restraining order… the judge just sits there and laughs at you. I had to report them and they sent me another judge, and he’s no help either… you just feel like you’re being violated over and over and over again.” (25-08-2008, interview13, Female – age n.a.)

When homelessness compounds disability, interviewees also feel that their personal circumstances result in barriers in accessing the legal system.. They feel silenced and experience various attitudinal and systemic barriers that inhibit their participation and right to access and utilize the justice system. One interviewee reports:

“What I intend to do is go to city hall, but being homeless, it’s very difficult. I don't have access to phone… I don't have an address… I don't have access to my computers… it’s very difficult to communicate with these people that might be able to give me some explanation of why certain things have happened to me, or to listen to my complaints…” (12-09-2008, interview19, Male – age 47)

Intersectional Analysis

There were differences found in the study, based on the age³ and gender of participants, in the context of the eight areas of life. The data explores human rights principles in relation to these attributes.  It is important to note that this study included more females than males, and also included a majority of individuals over the age of 41, with far less participants in the 18 to 40 year old demographic. The total number of participants in this study according to age group and gender include:

Note #3

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.

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The Impact of Age

The impact of age on participant experiences in the eight areas of life was examined. Areas of particular significance for the middle-aged group (35-54 years of age) occur in the domains of Social Participation, Income Security and Support Services, and Work (Table 13b).

Younger participants (18-40 age groups) tended to report human rights experiences in the area of Education and Information and Communication more often than the older interviewees. This may be explained by the greater relevance of these particular factors in the lives of younger people – who are more likely to be engaged in the Education system, or Communication and Information systems than those in the older demographic group. In contrast, results in the area of Health, Habilitation and Rehabilitation, as well as Access to Justice, were the concern of a higher proportion of mature participants (55+ and 41-55 age groups), which might be an indication that older adults may require or utilize the services of the legal and health care systems more so than their younger counterparts. 

When examining the participant responses from the perspective of human rights principles (Table 14), and taking into account the higher number of individuals in the age group of 41-55 in this study, differences are less obvious. The principles of dignity, as well as participation inclusion and accessibility, and respect for difference garnered the highest proportion of participant responses in all age groups. An interesting difference between the younger and older participants (56+ and 18-40 age groups), are issues related to autonomy. Here, the results indicate that the younger group reports a lack of autonomy to a greater degree than those in the older adult category. Reasons for this may be grounded in the extent to which younger people with disabilities have higher expectations for autonomy.  On the other hand, it may be more likely for younger people to lose decision-making capacity to caregivers or other authority figures around them. These hypotheses need to be tested in studies with larger samples.

The Impact of Gender

When examining differences in men’s and women’s experiences across the eight areas of life examined in this study, there is remarkable similarity. Women, however, were slightly more likely to report experiences related to Education, and men more likely to discuss experiences of Access to Justice and Information and Communication (see Table 15).
Women’s and men’s experiences were also similar in almost all categories related to access or denial of human rights (Table 16). Women, however, were slightly less likely than men to report self-determination and inclusion and accessibility, while men were less likely than women to report experiences of respect for difference.

Analysis based on participants’ responses to discrimination

Systemic Roots of Discrimination

This study also explores the systemic roots of discrimination, as perceived by people with disabilities themselves.  These focus on economic, social and legislative factors. These three areas are seen as fostering and creating the discrimination interviewees experience or have experienced in the past on the grounds of their disabilities.

Note #4

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%

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Most participants perceive social factors as the most dominant root cause of the discrimination they face. Ignorance and widespread misconceptions about disability are thus reported as significant sources of exclusion and disability-based discrimination that people with disabilities face in the city of Toronto. Here are some of the comments that were gathered:

“The toilet was constructed by people who are not disabled and they didn’t, they didn’t consult people who are disabled when they constructed it … they assume that if you are disabled that you can do, but we can’t.” (20-06-2008, interview18, Female – age 56)

“I don’t quite know what goes through people’s heads, maybe sometimes they think that … a person with a disability is just being difficult or…demanding something exceptional. That’s where you get into how much people really believe in accessibility… and whether they really think that everyone should have an equal right to be able to get around in society.” (28-08-2008, interviewDTB15, Male – age 39)

“I’m not from the predominant culture, and I have a disability, so people perceive me as being less capable and different than them.” (interviewNoCode_2, Male – age 45)

Economic factors closely follow as a prominent source of systemic discrimination and exclusion. The drive for profit that is characteristic of capitalist societies is often pointed out as a systematic force pushing people with disabilities being perceived as a cost and a burden as well as being seen as outsiders. One interviewee clearly stated it when he noted:

“In the case of… a private business or restaurant or something, there is a pure cost issue … the issue just comes down to logistics and money and timing and how to get it done.” (28-08-2008, interviewDTB15, Male – age 39)

Responses to Abuse and Discrimination

Note #5

Since each respondent may have reported up to three different incidents, percentages are calculated on the basis of the whole sample and do not sum up to 100%

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Participants in this study were also asked about the ways in which they respond or have responded in the past to situations of abuse and discrimination. The results indicate that in most instances, people with disabilities choose to confront or take some form or action against poor or discriminatory treatment.  Indeed, in the majority of cases individuals chose to report or pursue legal action after experiencing discrimination, indicating a proactive attitude in advocating for their human rights, even though the end-result is not always guaranteed:  

“I finally figured out that the best way to deal with bad situations is to either get my social worker or somebody to help me, or ask for the person higher up in the organization... I did it by researching who to complain to…but you don’t always get listened to, or things don’t always change.” (25-08-2008, interviewDTB13, Female – age 55)

“There have been times – well, three or four that I can think of – in the last five years, where I’ve called the police and insisted that they enforce the law.” (interviewNoCode_2, Female – age 45)

In a number of other instances, when participants did not formally report experiences of discrimination, they still react with resistance by returning to or trying to change the situations or contexts in which they experience such treatment. As one interviewee put it:

“If I come across something that I perceive as unjust, or things that have happened unfairly, I tend to be very vocal and… to advocate. So a lot is my own attitude… I sometimes need to force the issue.” (interviewNoCode_2, Man – age 45)

Reasons for Not Reporting

In cases where individuals chose not to report the situations in which they experienced discrimination the monitors probed the reasons behind such choice According to the findings (Table 18), the most important reason for not reporting discriminatory incidents is a perception that legal action would not result in any significant consequences or would not change the situation in any significant way. Part of this may be fuelled by a genuine distrust – on the part of the person with the disability – of the authorities, as one interviewee put it:

“The reality is, you can’t report. I didn’t know the system and I felt that if I reported it… that professor is going to say something to another professor and I’m going to be seen as a horrible student… they're in charge of your grade and you can’t really say anything…” (22-01-2008, interview2, Female – age 28)

Within the category of other reasons for not reporting based on ableism, ,a common sentiment expressed by a number of individuals is the feeling that they must be selective in their reporting of such treatment.  Here, individuals feel that they must “pick and choose their battles”.  Given that experiences of discrimination are quite frequent and that to make a claim takes considerable time and effort, individuals feel they have to drop some issues and just get on with their lives:

“There didn’t seem to be any point. It wasn’t that big a deal. I didn’t want to put in the effort it would have taken to fight it through official channels.” (interviewNoCode_2, Female – age 45)

In one instance, the interviewee felt that their word would not be taken over that of a professional.  In addition to the assumption that nothing would have happened, and feeling as though reporting discrimination is a complex and cumbersome process, some individuals reported that they didn’t report an incident out of a genuine fear of the consequences. This is the case when there is concern that doing so could mean that he or she might lose much-needed support services and/or financial benefits:

“Well it’s fear because… on the surface you’re told that there is no ramifications, but… when somebody has your life in the palm of their hands, as to whether or not your benefits get cut off, and you’re not willing to take the risk... I’m actually ashamed of that because I used to be quite the fighter, but my existence depends upon somebody saying…. I fit the criteria for benefits, otherwise I’m finished.” (26-08-2008, interviewDTB14, Female – age 51)

Narratives such as this one are illustrative of the serious, and often invisible, obstacles that people with disabilities continue to face as barriers to exercising their human rights.

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