Section 4: The Study

The provision of evidence-based information for future policy making is the purpose of this project. Semi-structured interviews, undertaken by disabled Monitors with 100 disabled New Zealanders provide the information for the analysis undertaken below.

Key Objectives of the monitoring project

The project involved field interviews to collect accurate and reliable information regarding the human rights situation of disabled New Zealanders. At the same time the monitoring project developed a sustainable system to ensure that disability rights data collection continues beyond the duration of the formal project by creating networks of people to monitor disability rights and by building monitoring capacity within those networks. The project also developed the technical infrastructure needed to collect and store information of this type.

A key objective of the monitoring project is the generation of reports available to disabled peoples organisations, other groups working to improve the lives of disabled people, the media, government bureaucrats and politicians. The reports will inform people about violations of the rights of disabled people; address existing infringements of disability rights and provide information to prevent future rights violations. They will provide evidence to support advocacy for changes in laws, policies, and programs to improve the lives of disabled people. Finally they provide a benchmark to monitor the New Zealand government’s progress in fulfilling the commitments it has made to disabled people through its ratification of international human rights treaties.

Interview questions

The monitoring project attempted to find answers to two questions:

1) What barriers do disabled people face with respect to the exercise of their civil, political, social, economic and cultural rights?

2) How is the exercise of rights by disabled people affected by intersecting forms of disadvantage (e.g. race, gender, ethnicity, geographic location, age, education level and income level)?

Gathering information so that DPOs can submit empirically based information on the state of disabled people’s rights in New Zealand to relevant national and international bodies.

The New Zealand Experience of the DRPI Disability Rights Monitoring Project

There are four basic principles that underlie the DRPI monitoring of disability rights.

The first principle is involvement of disability organizations and disabled people individually, in all aspects of the project. In the case of New Zealand this process was managed and co-ordinated by Disabled People’s Organisations. Ninety five percent of the people involved in the project were disabled. The Monitors were disabled, the majority of the transcription was done by disabled people, and three out of four of the analysis team were disabled people.

The second principle is capacity building of organizations of disabled people and disabled people individually in order to ensure the sustainability of monitoring activities beyond the life of the project. This begins with the initial training sessions and continues to be built in the feedback process built into the DPRI method. Capacity is built with respect to: understanding human rights and disability; how to monitor disability rights (including associated privacy and security concerns); how to train others to monitor disability rights; how to store and protect the data collected; how to analyze monitoring results; and how to manage a monitoring project. A “train the trainer” model is employed with the expectation that those who have gained the skills will, in turn, train other people.

In New Zealand a five-day conference involving an explanation of the interview process, training in interview skills and background to the human rights legislation was held. At this conference interview skills were taught and practiced. The Monitors are a diverse group and this diversity came to the fore in interviewing techniques in the way that they engaged the interviewees. The skills learned during the training are transferable to other monitoring and interview situations. The analysis team now has skills in the use of NVIVO and analysis of interview data. In subsequent projects these skills will continue to be honed. The process of watching, learning and participating proved an excellent learning mechanism.

The third principle is involvement of people with different types of impairments, that is, a “cross-disability approach”. Consistent with the need to protect and in order to promote the human rights of all disabled people, it is necessary that those involved in project management and implementation and those who are interviewed, are representative of the broad range of impairments. By working together to gather information, people with one type of impairment gain a better understanding of the situation of those with other types of impairment. It is hoped that this will help build multi-group cohesion and strengthen the overall bargaining power of the disability movement.

The process of producing the report was organic with people from a variety of disability groups coming together and working in a cooperative manner. Amongst the DPOs a previously untapped spirit of cooperation is now in evidence.

The fourth principle is an emphasis on the personal stories and priorities of disabled people. The monitoring tool has been developed to ensure that disabled people have an opportunity to tell their own story and to identify those rights issues that are most important to them. The resulting information reflects the most important rights issues raised by the participants. They identify those rights issues which are priorities to themselves. This is a process in which they are asked which stories they want to tell.

A connection between the Monitors and the interviewees is in evidence in the interview transcripts. It is clear that a bond is formed between interviewer and interviewee and that in many cases there is a shared or common experience underpinning the dialogue.

Collecting the information

The findings presented in this report come from the experiences of disabled New Zealanders. One hundred interviews were undertaken and ninety eight have been used in the analysis. The interviews were digitally recorded, transferred to CD, transcribed and analysed using NVIVO. Interview notes written by the interviewer providing additional contextual information such as an overall impression of the interview, location, and the number of people involved in the interview also inform this analysis. The Convention Coalition committee chose four regions in New Zealand as study sites: the South Island, Wellington, the Bay of Plenty and Auckland. The interviews were carried out over a two month period by interviewers working in teams of two.

A monitoring instrument supplied by DRPI that uses human rights standards defined by the United Nations was employed to collect data. The tool used a series of close-ended and semi-structured questions. Detailed records regarding interviewees’ demographic characteristics and experiences were collected at each site. (See appendices for a copy of the monitoring instrument entitled Interview Questionnaire).

The Monitors (interviewers) were disabled people. Using a snowball sampling technique to identify and select interviewees there was an attempt to ensure the interviewees included a cross-section of different types of impairment, ethnicity, gender, class and education. Part way through the interviews the Project Coordinator audited the demographic characteristics of the interview participants subsequently recruiting participants in line with the missing demographic characteristics.

The Monitors worked in pairs each of whom had a different impairment. This enabled the interviewers to act as support for each other both in terms of capturing the data and in assisting each other. Whenever required, New Zealand Sign Language (NZSL) interpreters were employed. NZSL interpreters are at a premium in New Zealand. Difficulty in procuring them meant that some interview teams were obliged to conduct up to three interviews in one day. All the interviews were digitally audio recorded and notes were made immediately after the interviews and time was allocated for the Monitors to do that work.

Summary of the Analysis Process

The interview transcripts were coded into NVIVO, a qualitative data analysis package, using a coding scheme provided by DPRI. On completion of interviews the Monitors brainstormed ideas that had emerged from the interviews at a meeting in Wellington on August 6^th. During the coding process the data analysis team met a number of times to discuss themes emerging from the interviews. On completion of the coding process they met and brainstormed emergent themes and important issues that arose in the course of the interviews. NVIVO was subsequently used as a tool to identify themes and issues from the interviews. The draft report was sent out to members of The Convention Coalition in order to gain feedback from the wider community. This process culminated in a meeting in Wellington on November 15^th where themes arising from the interviews were discussed and recommendations formulated.

In order to facilitate cross cultural comparison the DRPI have formulated categories of analysis analogous to The Convention. Dignity, autonomy, inclusion, participation, respect are coded positively and negatively within the categories of: work, privacy and the family, social participation, income security, education, information, access to justice and health and habilitation. These classifications provide evidence-based results that have been used to back up the analysis of the participants. NVIVO classifies and categorises data allowing qualitative cross tabulation of information. This enables a comparison of the exercise of human rights in various domains of society and the evaluation of intersecting forms of disadvantage for example, ethnicity and education level or gender and unemployment. If, for example, we discover that people in the Bay of Plenty have much lower employment rates than other interview sites, we can then query the data with regard to level of education and other labour related issues, to ascertain the significance of the information.

Findings from the Interviews

Self determination is a founding principle of disability politics. Participation strategies are a means that disabled people have employed in the journey to self determination (see appendix 1 for a discussion of the ethics and philosophy underpinning the data collection and analysis process of this project). In keeping with this principle the words of the participants and the Monitors have been used to summarise themes. Demographic information is presented below. Findings are organised according to the main themes emerging from the interviews. In the first section, analysing human rights, the main themes are organised around social participation, health, education and work. In the second section, ‘resistance, recommendations and resilience’ responses to abuse, reasons for not reporting abuse, the participants’ recommendations for change, and systemic roots of disablement are analysed.

Demographic Characteristics of Participants

Key demographic characteristics and the participant selection process are described below.

Note #2

No participants identified as transgender

Return

A sample size of 98 does not provide enough information for sophisticated data analysis. However, the combination of simple statistics and rich information from the semi-structured interview format provides rich data to inform future decision-makers. The participant checking exercise undertaken by the Project Co-ordinator part way through the interview process ensures a good range of impairments are included in the sample. Vision, hearing, cognitive or learning and psychological disorders are well represented, mobility and physical impairments is the largest category by a long way and head injuries/brain disability was chosen by two participants. The sample is skewed towards females [60 percent]. The majority of participants [89 percent] are aged between 22 and 64 years of age. The sample is well educated with all but one participant attending school and 54 participants having engaged in tertiary education 26 of whom have a university qualification.

The mandate for recruitment for the interviews was to move outside of known contacts. Initially, participants were to be recruited using a non-probability sampling method known as the snowball technique. This means that people who take part in interviews are asked to suggest new participants to be interviewed. Sampling error, or the degree to which a sample might differ from the population, cannot be calculated in a non-probability sample. We can however, build up a demographic profile of our participants thus providing a context for understanding the results.

The Project Co-ordinator and Site Co-ordinators started the process by selecting the first few participants in each site with the intention of implementing the snowball technique. However, this technique often resulted in deadends. Reasons for this include the reluctance to pass on details without seeking peoples' permission first, non-contactability of referrals and refusals to be involved.

With mounting pressure on Monitors to complete all their interviews in a very limited time-frame both the Site Co-ordinators and the Project Co-ordinator intervened to kick-start the snowballing again by resorting to convenience sampling methods. For example, Site Co-ordinators suggested people that they knew in the other sites and the Project Co-ordinator suggested other leads to follow for each site.

The Results

Human Rights

Evidence of a disabling society with regard to civil, political, social, economic and cultural rights all feature in this report. Of all of these categories, social participation emerged as the most pressing issue for disabled people.

Social Participation

With thirty nine of the participants directly mentioning experiences of segregation and isolation with regard to participation in social, cultural, and political life, in sports, recreation and leisure activities a total of sixty times, social participation emerged as by far the most significant single issue.

Experiences of segregation

Being made to feel disabled

Social participation is a complex category. Tangible barriers to participation such as access to buildings and information are relatively simple and easy to identify. However, it is the intangible barriers to social participation, things that are taken for granted in non-disabled peoples’ lives, such as friendships and other social networks, and access to the social and cultural world that are most pervasive in the results. This barrier to participation can be meaningfully expressed with reference to the participants’ experiences’ of ‘being made to feel disabled’.

Par:... more recently I’ve taken to judging restaurants, not by the quality of their food or the variety of their menu, but on how blind they make me feel, because I don’t like being made to feel blind and some people are just brainless, and I think a huge amount more could and should be done in training of staff in how to deal with people with all forms of disability...

Non-disabled peoples negative attitudes and lack of understanding of impairment effects marginalises and excludes disabled people.

Par: When I say – I often – when I’m at a shop, I say that I am deaf and suddenly people change and they think I’m dumb and I think “Oh brother, oh brother!”….. I don’t enjoy going out with somebody and people will say “Oh, Miranda’s deaf.” I’d rather they said, because I feel that’s a label and people associate ‘thick’ and ‘dumb’ and ‘couldn’t care’ and things like that, with the whole deaf person – deaf label.

I prefer people say “Miranda doesn’t hear but she lip reads,” or something or other, some sort of scenario, some sort of situation.

Int: You were saying having your knee trouble has made you feel disabled, do you think some of the fear you were talking about before is about people seeing you as disabled?

Par: they would treat me differently.
Int: How do you think they would treat you differently and how would that affect your life?

Par: I think sometimes the whole pity thing is condescending and offending and it kind of keeps you down like 'oh you poor thing, poor you I'm so great but poor you -I'm perfect and you're not'. In that circumstance I could say 'but you're not perfect, no one is and at least my disabilities might be physical but yours are inside of you, in your mind and your heart'.

Par: I saw a guy when I was at the shop – I went down there. I knew him very well but he totally ignored me and he wouldn’t look at me – he saw me – he knew I was there but he wouldn’t acknowledge that I was there.

Int: Do you think people look at you differently because of you’re…?

Par: Yes.

Int: You do. Can you explain that? How do you think they see you as say yourself and as a family because you all have disabilities? Do they treat you differently?

Par: Yes, some of them. Yes some of them in [a small New Zealand town] and when you’re walking down the road or somewhere and they would shout out in the car to you – at you.

Int: Really. What nasty names?

Par: Nasty names, yeah, because I look different and they would call me nasty names....my wife just says, “Just ignore them.”... And you walk away. Sometimes I say – I say to her “I find it hard to do that”.

Int: Yeah, you would. So she can walk away and just ignore them.

Par: Sometimes.

Int: Yeah, but it hurts, doesn’t it?

Par: Yeah, it does.

Attitudes disable people. Being made to feel disabled is not contingent upon skills or aptitude and is present even when disabled people have the same or better skills than non-disabled people.

Par: The second thing was so that when I went across the road to the second quiz I was very nervous. But because I could answer the questions really well, I’ve got quite a good knowledge base, we won the quiz, quite handsomely actually, and I was kept on. I had essentially become valuable and the quiz team next to me was rather interested in getting me into their team, but they were a little bit put off by my appearance, so I told them basically to go to hell.

Physical environment

In order to participate in social life the social environment needs to accommodate peoples’ needs. However, to get to social venues people need to be able to travel. Adequate transportation facilitates many aspects of disabled peoples’ lives. The lack of adequate transport in terms of availability, ease of use and cost featured in peoples stories. Airline travel can be hit and miss for disabled people and travelling away from mainstream centres can be tenuous.

Time and waiting for transportation is a frequently cited issue:

Par: I ordered a taxi and if I’m in another city I’ll tend to say ‘I’ve got a guide dog because it helps with identification, not because I have to get permission. But in Auckland I rarely do....because a well-known taxi company came [saw me and the dog] and left.

Par: there are mobility taxis around, but they are very very expensive and are not available at the times that I require them.

The poor quality of service of transportation services; particularly taxis and buses emerged as a systemic cause of stress for disabled people. Solutions to this ranged from education of providers to better subsidies for services:

Par: I think they should do some more disability awareness stuff [because the prob lem with the taxi drivers] wasn’t just the odd person it was about twenty drivers.

Par: Better funding for, and support taxi companies, mobility taxi companies....

Overseas travel is an issue in terms of finding adequate accommodation, movement around foreign cities and travel to and from the destination:

Par: I would say because I’m a wheelchair user, find access um, the biggest barrier, um into participating. That prevents me from participating fully, especially around travelling. If I need to go overseas airlines make it very difficult. Also my wheelchair gets damaged almost all the time when travelling.

Access to venues is a major barrier to participation in social life:

Int: [Access issues question]

Par: Classic ones are some shop layouts and in particular pharmacies seem to be a complete nightmare.

Par: Oh that’s the whole time.... there is so much I can’t do because of accessibility. One was really bad was [name] our MP. I can’t get into her office.

Int: What did she have to say?

Par: I said I hope you’re embarrassed. She said oh we’ll fix it up, nothing’s been done.

Par: access into restaurants, into public places, um, you know. When my friends and I want to go out for dinner, we can’t just go to a place that we want to go, we have to check for access, we have to check for accessibility, toilets, everything, and most places are inaccessible, especially clubs and bars and things like that. So, I just don’t go to them, I guess, yeah.

Int: When you say you check into them, what, is there a place that you go to?

Par: Websites and phone numbers. But, good places, food places are those that put their information on the website for us to research, especially if they include pictures and pictures of their doorways and their restaurant layouts that really helps us, yeah.

Lack of suitable accommodation and accessible venues outside of main centres is an issue. Participants miss significant events in the lives of people in their social networks. The results suggest that there is an issue for people using larger wheelchairs and power chairs. Power chairs are particularly restricting because of the weight and lack of manoeuvrability over lips and curves. One participant could not go to the movies because the weight restrictions in the only local theatre:

Par: They don’t have a lot of wheelchair ramps; and if they do, they’re too small, the doors are too narrow. Par: So access is, is a really big thing. I find that I can’t go out. Some friends want to meet at a restaurant and you go there and you can’t, you know, it’s just, you can’t get in the door or the space is too tight. I’ve been to motels where they said that they have wheelchair access but then you get there, there’s a big lip on the door, your chair can’t get over it and they haven’t realized you’re in a power chair, and that your power chair alone weighs about a hundred and forty KGs, and with me on top of it, well. So it’s like, you get into a lot of those situations, where is it, and just, the doors from a lot of venues, you go up to a place and you want to go in there but you can’t open the door, and there’s no-one around or, you know, it’s just kind of, you don’t want to ask people, could you open that door for me please? I mean I do now. But all of those kind of things, they would actually stop me from participating in stuff.

Par: In the last five years I have been left out of a great number of things. I’m unable to attend because of the hearing and the brain injury. It makes it difficult, a lot of friends that I had have dropped away from me and I’ve become more and more lonely and it is hard to join groups.

Communication and Social Isolation

Problems with communication lead to social isolation. This is an issue for people with a variety of impairments. The associated problems however, are illustrated very clearly in the deaf community:

Par: My experience of being left out is very common as a deaf person, not just at school but pretty much everywhere. That's the experience of being deaf, is not to be able to participate as part of what's going on around you.

Par: Yes, they probably think 'she can't hear the music and she won't have a good time'. But it would still be nice to be asked sometimes to go to a party or something. My brother who is eighteen, he goes to parties every weekend.He goes out with his mates and they go driving around in his car cruising that's illegal now -but he has a good time. I bet if I was hearing I'd be more like him. I'd be out more.In terms of exclusion, if you tell someone that you're deaf and you have to lip read, there's this instant... with some people you can tell they think oh, and then they just walk away; because of the difficulties in communication, they don't know how to communicate. Other people are just fine with it and they just keep talking. So if I go into a shop and someone comes up to me and I tell them I'm deaf and have to lip read, 75 percent of them will just walk away.

Being deaf means not only that you can’t hear but also that if you are signing you are speaking a different language. Becoming deaf in later life means not only that access to the hearing community is limited but that within the deaf community you have a kind of second language status:

Int: Do you have some thoughts about why it’s easier for a person, perhaps that’s born deaf, to access communication and sign, but a person who experienced a later deaf disability doesn’t have that same access?

Par: Definitely. The whole deaf language is really hard, the grammar’s hard, the culture’s different, I imagine it’s exactly the same as if you come from another foreign speaking country like Arabia and get plonked in New Zealand, I imagine you have exactly the same problems as what I’m experiencing...

The example of deaf people illustrates the complexities of living with impairments. Beyond the issues associated with language and communication there are attitudinal difficulties associated with identity.

Par: Yes it's like I'm in the middle -even though people say I've got the best of both worlds it's not entirely true because I'm still stuck in the middle. Deaf people sometimes don't want to accept you because you have a cochlear implant and hearing people don't want to accept you because your disability, you're not all there -but I am all there, they just don't take the time to understand or have the time to learn about different kinds of being deaf.

Disability as Difference: Social isolation

This project is part of a process to demystify disablement. The participant above identifies people not taking time to understand or learn about different disabilities as a disabling practice. As H.P. Lovecraft wrote in ‘Supernatural Horror in Literature’ (1927) ‘the oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown. The following quotes illustrate the way in which fear of the unknown manifests with respect to impairment:

Par: I used to get on the bus, and I would sit in the seat, and the bus might have been crowded, but nobody sat next to me. Simply they would take one look and avoid sitting [next to me]. Which wasn’t so bad for me but I was always wondering why nobody was [sitting next to me].

Par: Yeah, and anyway, again for like people in wheelchairs and people with disabilities they stereotype you and they sort of like stay away from you.

Par: Well, when I go to the shops, they think I look like I’m handicapped.

Int: How do people react when they hear that you have a hearing disability? Do they yell?

Par: No, they don’t even bother to talk to me.

Par: But at the same time it’s been a very difficult part of my life because I’m deaf, I’m often isolated. Some people think that I have some kind of sickness and they’re too scared to come and talk to me and then on the Marae and stuff, it makes it worse, you know, and I feel like I’m further isolated. So a lot of the times I actually just give up.

These stories of social isolation occurring through people’s negative reactions to difference are an integral part of the denial of human rights. A society that ignores disabled people is far from inclusive. However, sometimes non-disabled people’s inability to deal with impairment becomes about power and control and as the following anecdote demonstrates disabled people are subjected to deliberately marginalising practices:

Par: One example would be where my daughter went on a North shore – to Wilson Centre… she was getting new splints, and one of the staff members there, and of course they had an interpreter, and the woman said to the interpreter, she said “Wait, don’t start signing at the same time, I’m going to explain it to you first and once I’ve told you the entire story, then you tell the deaf person.” And the interpreter tried to say to the hearing person “Well hang on, we actually sign at the same time as we’re hearing because then the deaf person has access straight away.” And she controlled that and she said “No you’re not, you going to stop signing and put your hands down, and youre going to listen to me, and then you’re going to tell the deaf person the message.” That was a blatant disregard of my rights to get the information, the interpreter is simply there to bridge the communication gap. But to get it second or third hand, she made a decision about how I was actually going to get information. So in that sense, she controlled me but she also controlled the interpreter. And the whole point of the exercise was for my daughter’s health.

The irony of this particular incident is that it took place in a medicalised context. The social model of disability underpinning both The Strategy and The Convention had its inception in a critique of the medical model with its paternalism and tendency to categorise people according to impairment.

Health

References to negative experience with regard to health emerged as the second most significant theme. Instances of marginalisation with regard to health services are idiosyncratic and difficult to quantify. However the fact that health is an issue is not surprising given that disability politics grew out of a critique of the medical model. While the participants’ experiences do not lead us to particular issues, they do support the social model critique of the medical model of disability, demonstrating that in a medicalised environment, where impairment takes precedence over the person, marginalising practices such as the instruction to stop signing and put your hands down, and youre going to listen to me, and then you're going to tell the deaf person the message reported in the precious excerpt, are likely to occur.

The quality of care received by people who need carers in daily life is intimately related to health outcomes. The problem of finding good carers is a consistent theme emerging from the interviews and an issue with substantial historical precedent. Since the move from bulk funding to contacting in New Zealand post 1984, quality and continuity of carers has been an issue for disabled people. Problems in this area are often attributed to the low wage and undervalued nature of caring work.

Par: It's difficult too because the hourly rate for attendant carers is not very good and it's hard to attract decent and reliable attendant carers at the low wage rate.

The results of the monitoring project clearly demonstrate that health continues to be an issue with experiences of negative dignity, disrespect for difference, lack of autonomy, discrimination and inequality and segregation and isolation featuring far more strongly than their positive counter points.

Income Security and Support Services

The results with regard to income security and support services revealed a similar pattern of negative experience. There is an intimate link between health, income and support services, it is therefore not surprising that there are many references to overall health and the health consequences of inadequate care services in the income support and support services category:

Access to adequate care not only affects quality of life, it also often has an immediate impact upon health and in extreme cases the effects of inadequate care can be lethal.

Par: I’ve seen that happening to a lot of disabled. I’ve been like this for 36 years. I’ve been in Middlemore children’s spinal unit six years and I've seen a lot of, a lot, of human rights and, and deprivation and friends just die because there is no support

When people complain about inadequate care or no shows, the care agencies don’t seem to care.

Intersecting forms of disadvantage

How is the exercise of rights by disabled people affected by intersecting forms of disadvantage (e.g. race, gender, ethnicity, geographic location, age, education level and income level)? The interview guide directs the Monitors to ask questions about ethnicity, social class and gender. Despite this participants were not forthcoming with regard to comments in this area with one participant commenting on class and disability; four participants speaking about ethnicity and disability and four speaking about gender and disability. Nonetheless evidence of variation in the experiences of disablement exists in the participants’ stories.

Education

While disabled people do face barriers in gaining tertiary education rates of participation in tertiary education are significant with close to half the sample having participated in tertiary education, including a number of Masters Degrees.

Participation rates for Pacific Peoples and Maori are lower than the rest of the sample population. These figures demonstrate a degree of social participation with regard to the education system in New Zealand. Given that social participation emerged as the most pressing single issue in the study it may be that the education system may provide some clues toward facilitative practices and systems in the wider community.

The education category in the monitoring instrument is specifically designed to gather information on life experiences that took place at school or through education. Within the categories measuring negative experience, disrespect for difference and problems with regard to participation, inclusion and accessibility occurred most frequently. On the other hand positive dignity also emerged as a significant category. Responses within the three categories cited above are approximately twice as frequent as any other education category with thirteen participants making twenty references with regard to disrespect for difference, eight participants making thirteen references with regard to participation, inclusion and accessibility. Within these negative categories most of the references relate to experiences within primary and secondary schools or to problems with accessing information such as lack of NZSL interpreters or Braille translations.

The positive dignity category shows thirteen references made by ten participants. Individual people’s efforts to enable learning on a one to one basis are the main topic in this category. This finding adds weight to the idea, expressed time and again in this study that education and knowledge about disability enable participation, inclusion, and human rights.

Barriers to work force participation

The high rates of educational attainment demonstrate that those disabled people are capable and disciplined workers, yet this work ability is not reflected in their employment rates with a high percentage of unemployment evident in the sample. The unemployment rate for the sample is approximately 62 percent³. This is compared to seven percent in the general the population over the same time frame (Department of Labour, 2010).

Differences between employment rates of men (42 percent) and women (33 percent) are significant. Ethnicity is a very large factor in the employment statistics with Pakeha 46% percent identifying as unemployed as opposed to rates of 83 percent for Maori, 85 percent for Pacific People and 61 percent for all other ethnicities.

Number of Participants Employed and Unemployed by Ethnicity (numbers may not be exact)

Note #3

These statistics are significantly different from those gathered by Statistics New Zealand in 2006. It is likely that this is due to the non-probability nature of sampling frame selection and the fact that most of the interviews took place during work hours. The 2006 Disability Survey (Statistics New Zealand, 2008) revealed that less than half (45 percent) of disabled people were in the labour force, compared with over three-quarters (77 percent) of non-disabled people of working age.

Return

The DPRI monitoring instrument did not require participants to disclose an income range however employment status is a good indicator of income level. Low income in combination with the higher living costs associated with disability compound to produce further barriers to participation in the work force. Well educated and work skilled participants report giving up jobs or not taking up work because the work environment or the pressure to work full time makes employment untenable:

Par: I’ve been on the benefit and I’ve worked part-time, self-employed and contract work, and I guess because I’ve had that experience working for a Government department and other places over the years, I’ve built up a few contacts so I’ve kind of been quite lucky with being offered work, and the, but the limitation has been more the energy that I’ve got to do that work so I’ve often said no to bits of contract work if it just, I guess my priority has to be, has been to be healthy rather than to get off the benefit or to earn heaps of money.

Int: So health and energy’s been a bit of a struggle in the last five years...and sometimes it’s hard to say no [to work]?

Par: Oh it’s very seductive when you’re offered work and you’re, oh yes, that sounds exciting, and you think, oh I could do that, it might stretch me a bit, I could do it. Yeah, that’s quite hard to say no to and to be honest, you know, to live on a low income is stressful too so you’re kind of balancing the stresses that you choose

Lack of accommodation for the everyday reality of living with an impairment featured in many of the interviews. For many disabled people the energy that it takes to get up and dressed and make their way to a work place significantly cuts into their potential productivity.

While many disabled people have the capacity to work productively full time working five days a week, nine to five, within standardised work hours may not be a viable option:

Par: When I was appointed to the job I was expected to be regularly in the office. This was something I hadn't been expecting, I wasn't told that I'd be expected to do that. At home I could get my work done at any time of the day or night that I was awake. It didn't matter as long as I got it done, no-one really worried. But because I find regular hours very difficult to keep to now, it was very difficult to be 'on song' for the same 8 hours every day, that became quite stressful.

Impairment effects can be both time consuming and physically demanding and as a result many disabled people develop strategies to get the most out of their days. Rigid work place policies may make it difficult to execute these strategies. Clearly there is a need for change in this area. The need for change in the area of employment, in the form of government supports to improve access to work for disabled people, emerged as the second most significant recommendation to improve the situation of disabled people. While The Strategy and The Convention enshrine non-disabling principles legislative change by itself is not enough to make significant change to a disabling society:

Par: I just was really tired. I talked to the managers about, could I come in later in the mornings, citing the disability strategy, citing The Convention. Now this [was the Ministry of …]. It was an organisation that was promoting both The Strategy and The Convention to schools, yet, I just said, could I come in at 10.30 in the morning instead of 9.30 and I could work later in the day? Because it was like I was so tired it was, I mean it wouldn’t have been a final solution, because I just really needed a rest, but it was a way I could have continued, a way I could have worked in a short term. And they couldn’t see past their own HR strategies as a government department, my manager said I needed to be there at 9.30 instead of 10.30.

Int: Did you ever, was there ever an opportunity to do any work from home?

Par: No, wasn’t allowed either. So the Ministry of […] is actually very, I mean the particular manager I was working under was probably a person who was unable to make any accommodations,

When disabled people are accommodated in the work place they are often perceived to be receiving special treatment. These attitudes are in themselves disabling:

Par: there’s some people will look at me and think well she looks fine – like there’s nothing (I won’t say the word) – nothing effing wrong with her – like why does she get the privilege of doing what she does or – because some of the time I go in I do different duties. It might just be like paper work and things like that and you know, -I suppose it might be looked upon as – she’s lucky, that’s all she’s doing but it’s not actually easy, it’s still physically demanding “you’re really lucky, or your – or those are good hours that you’ve got,” sort of thing.

The experience of disabled people in the work force offers a clear example of negative and disabling attitudes in New Zealand society. There is no logical reason why disabled people cannot participate more fully in the workforce:

Par: I don’t know why? I mean, I’ve got a Masters, I’ve got loads of experience, prepared to work incredibly hard, but obviously I’m just – and the longer I’m not employed, the harder it gets.

Small changes to attitudes and accommodation for the needs of disabled people in the work place have the potential to produce economic and productivity benefits that advantage the whole community, particularly if we are competing in an intellectual and productivity capacity in the global market place. In New Zealand for the Accessible Wellington Forum in 2006 IBM accessible technologies guru Mark Bagshaw pointed out that talented, motivated workers are going to waste in the disabled community, “They’re not just employable, but employable in productive, well-paid jobs,” Bagshaw said. Even four years later accessible technologies that were once expensive and cumbersome are now so available that many can be accessed on cell phones. With today’s connectivity it should be possible to create flexibility in the work force so that disabled people have the opportunity to participate.

Resistance, Recommendations & Resilience

The results in the preceding section come from the participants’ analyses of the Human Rights implications of their everyday experience. In the next section responses to abuse, reasons for not reporting abuse, the participants’ recommendations for change, and systemic roots of disablement are analysed.

Two hundred and seventy recommendations for change were voiced. It is clear that the DRPI interview process works as a vehicle for participation of disabled people.

Recommendations (for change)

Note #4

This category recorded ‘government supports to improve access to work’ for disabled people.

Return

As discussed in the opening of the analysis section, non-disabled peoples lack of understanding of impairment effects is a major factor in the social isolation of disabled people. While a large number and wide range of recommendations were made in the course of the monitoring project, the single largest category to emerge is the need to raise awareness. Calls for disability awareness training in all areas of life from the public sector to, service industries, to educational institutions, to society in general pervade the results. Participants suggest a variety of strategies to raise awareness. In the following excerpt an argument is made for a media campaign:

Par: I think we – you know, we have come some way but for me it will be some really across the board – really-really visible campaign. A bit like the ‘like minds -like mine’ campaign. And I – and I know that, that has cost lots of money and I know that it’s not perfect....But, you know, I was watching those ads last night and thinking, that’s exactly what you need. So you just need … there’s now a whole other set of ads they’ve just come out with now saying, “you know, what do you need to know to support someone through mental health,” and basically saying, just being there you know. So what do people with disabilities need? They need friends. They need employment. They need opportunities to experience the same things. So [we need] that kind of really systemic multi media campaign.

A clear message emerging from the project is that if you have an impairment, then people do not know how to relate to you. Education as a means of raising awareness is a simple and effective solution many participants suggest:

Par: luckily for me that we had these guys come in and talk to us [about] why people react in different ways and so that was fine. I went home and the next time I saw him, I went up and approached him and started talking to him. His whole manner changed. And that was just from saying that people don’t know how to behave around you.

Some people who you think, who you know very well, will be completely different and if I hadn’t been taught that I would probably never have spoken to him but because I understood that – they act differently well kei te pai and that’s good now. It’s just understanding that people don’t know how to approach you.

Another recurrent theme in the recommendations section and indeed throughout the results is frustrations experienced with regard to the inflexibility and time consuming nature of the bureaucracy. Bureaucratic processes and practices are not designed with the everyday realities of disabled peoples’ lives in mind. Systems are set up to cater to the requirements of the bureaucracy rather than the disabled person:

Par: Definitely more training for professionals, not just around the equipment but also around interpersonal relationships and disability awareness. We’re too easily put into boxes and usually they are square boxes whereas most of us tend to have round lives.

Par: ….there's an assumption the needs of the client will be met by meeting the needs of the bureaucracy.

Par: With service providers I’d like to see them coming at it from the point of view of “how can we make this work” rather than from the point of “let’s see if you crunch enough numbers or tick enough boxes for us to make it work”.…. I mean every year we have got to go through and drag out all of your receipts and substantiate anything to do with my disability. It’s a bloody nightmare, it really is….

Par: People need to know that just because someone has a back injury and needs to stand at their desk, it's not going to pose a health and safety issue. Especially if you have a discussion with that person, and that person is a logical, intelligent, thinking person.

Par: Every time, or every year there’s a needs assessment and they’ll come and update the information and I – feels like I’m explaining the same information again and again and again.

Bureaucratic systems were clearly identified as mechanisms of power and control over disabled peoples’ lives. A common example in the project is occupational therapists making inappropriate decisions about equipment and the design of house modifications:

Par: In this system you have to fight to have it recognised if the equipment doesn’t work or isn’t suitable. The OT held all the power and control and her position held more weight with funders and service providers than my situation as a client did.

The story of the deaf secondary school teaching student forced to take music class is a classic example of deliberately disabling bureaucratic practice (see vignette from the interviews in appendix 3)

It may also be due to the fact that impairment effects manifest themselves in context specific ways so a participants’ primary experience of disablement in daily life may not be different to that experienced in the interview context. For example, if a deaf person for whom sign is their first language lives alone in the country their Asthma may be their primary disabling experience whereas in an interview context second language status may be the primary issue.

The participants quoted in the preceding excerpts clearly feel they take second place to bureaucratic regulation. Occupational health and safety regulations, designed as social protection mechanisms are used to deny access to the work place. While the frustration of substantiating disability annually and retelling stories over and over to different agencies, departments and health professionals is a familiar trope. So familiar in fact that the Ministry of Health is already investigating the possibility of Local Area Co-ordination, where one person coordinates services across different agencies.

Reasons for Not Reporting

The results suggest that in general people will report human rights violations with relatively low instances of people failing to report. However, while nothing stands out as a particular barrier in this category there is mention of reluctance to report in the work place, resignation with regard to health and public transportation issues.

Par: Workbridge basically, for example, chose the taxi company for me to use, and I don’t blame them, because there aren’t many around, and are not available at the times that I require. So there isn’t much choice really.

Int: So accepting it, how does that make you feel?

Par: Ah, not that great, but, and I feel powerless. However, if I want to participate in the society and if I want to do the things that I want to do um, I have to put up with it. Otherwise, I’ll just end up staying at home.

Seven participants reported that they had not reported human rights violations because nothing would have happened. Two of these relate to taxi companies and two relate to health. However, in the above example there is an element of acceptance, of things being ‘not quite right’ the participant does not go so far as to analyse this as a human rights violation. Examples of things being ‘not quite right’ are pervasive in the participants’ transcripts. Fear of losing services is another reason people do not complain. Lack of financial means and lack of access and corruption were not significant.

Responses to Abuse

Querying the data with respect to ethnicity, education level and disability showed responses in proportion to the sample except in responses to abuse. Women are more likely to report abuse or take legal action with eighteen (thirty percent) of women compared with 6 (fifteen) of men reporting this action. The fact that significant numbers of participants articulate responses to abuse clearly demonstrates that disabled peoples’ human rights are not guaranteed in New Zealand.

Systemic Roots of Discrimination

In terms of the systemic roots of disablement, acts of exclusion and discrimination against disabled people that are related to the ways in which economic activities are organised and delivered, was most significant.

When participants raised issues with regard to economic factors, legislation and government support it echoed issues discussed elsewhere in the report such as bureaucratic inflexibility, lack of real understanding by government departments and issues with communication demonstrating once again a lack of understanding of disability issues in New Zealand society:

Par: And there are also lots of instances where people will say to me, if it's a government service, well no, it's your responsibility to book the interpreter, you're Deaf, you should do it. And I'm like, But hang on, you're a government service, I'm coming here, you need the interpreter so your hearing people can understand, I don't have a problem, I can understand Sign Language but you can't understand me. You book the interpreter, you have them here.

top