Gordon brings up significant issues about the juxtaposition of activism and research as well as the comparative contribution of researchers with and without disabilities. It may be helpful to provide a concrete example of such issues. I have a significant speech disability from CP. In 1992, much of my telephone communication was using TTY relay. For those of you not familiar with that service, I used a TTY (a keyboard with a telephone interface) to contact an operator who responded to me using a TTY like device. The operator made phone calls for me and repeated what I said. This made me independent on the telephone.
In the process, I discovered that most of the operators were young enough to have very acute hearing which allowed them to decipher my speech. Because I talk faster than I type, I came up with the idea of Speech-to-Speech. STS is a similar relay, but one that allows people with speech disabilities to talk to the operator rather than type. During the next decade, I convinced first the California PUC and then the FCC to require STS as a 24/7 relay service.
Coming back to the conversation about combining the efforts of researchers with and without disabilities, STS would be a much better service if I had had more information about the varieties of speech disabilities and about the financial structure of relay services. I did not know what a limited range of speech disabilities could benefit from the services of a patient operator with acute hearing. A large proportion of the speech disabled population has speech which is either so easy to understand that they don’t need STS or is so difficult to understand that the STS operators cannot comprehend what is being said. Currently, we are trying to make STS more useful to people with extremely severe speech disabilities by lobbying the FCC to mandate Video Assisted STS. VID-STS would be offered over the internet and the operator would be able to see the user with a speech disability. Unfortunately, we have no way to estimate the proportion of people who will be able to use VID-STS who do not speak well enough to use conventional STS.
The financial issue is two-fold. While calls between states are paid for by the FCC and reimbursed at a rate that motivates phone companies who provide STS to recruit users and provide good operator training and supervision, calls within states are reimbursed such that the providers take a loss in all states, except California. This eliminates motivation to increase usage and provide good operator service. That low reimbursement will continue because the nature of speech disabilities prevents the organization of state level advocacy groups to lobby for adequate reimbursement. To some extent, we can alleviate that problem when VID-STS becomes mandated. Because VID-STS is internet based, administration and funding must be national rather than state based.
The second financial issue that I did not know about when I designed STS is the rampant poverty within the speech disabled population who would benefit from STS. A large proportion of potential users have other disabilities which prevent employment and limit income to SSI. The multiple disabilities results from brain damage (a major cause of speech disabilities). This includes people with CP, TBI, etc. Many of these people cannot afford a telephone line even at a reduced rate. We hope to combat this problem by asking the FCC to reimburse VID-STS at a high enough rate to motivate the providers to make free PCs, ISPs and telephone lines available to consumers. Deaf advocates have convinced the FCC to reimburse the providers of their Video Relay Service at a high enough rate to motivate them to provide similar equipment and service.
Again, my point is that when disability advocates and researchers take on projects without sufficient knowledge about aspects of the project that do not impact their own personal disability, they risk an outcome which may be only useful to small proportions of the target population. See www.speechtospeech.org for more information about STS.
Bob
Bob Segalman, Ph.D., D.Sc. (Hon), President
Speech Communications Assistance By Telephone, Inc. (SCT)
E-mail: [log in to unmask]
website: www.speechtospeech.com
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Subject: DISABILITY-RESEARCH Digest - 8 Jun 2012 to 9 Jun 2012 (#2012-138)
There are 2 messages totaling 897 lines in this issue.
Topics of the day:
1. The role of disabled people within disability research: a few QUESTIONS
(2)
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Date: Sat, 9 Jun 2012 10:05:27 +0200
From: "Gordon C. Cardona" <[log in to unmask]>
Subject: Re: The role of disabled people within disability research: a few QUESTIONS
Dear all,
I feel I must thank all of you have replied me on the list or via my personal email. All your comments proved useful in addressing my concerns and to re-think my own position within disability research in the various roles I have played - research subject and, later, that of researcher. In some way, this has made me aware of the problems that both roles present to us as individuals. For, inasmuch as we try, we can never fully detach ourselves from our position within a particular context.
However, I think that the role of disabled people within the research process, especially within emancipatory research, remains central. Indeed, ideally disabled people should not only participate and be involved in the process of research but actually be conducting the research themselves. Yet, as some of you pointed out, this is not free from its dilemmas. For how I define myself as a disabled person will vary from another disabled person who wishes to be defined as "normal"? In this sense, must the disabled person define him/herself in a particular political language to be truly 'disabled' or representative of disabled people?
As a researcher, there is the danger that, even if you identify yourself as 'disabled by society', you run the risk of downplaying the views of those also defined by society as 'disabled' but who don't look at their situation in such terms. There is also the danger that by representing the voices of disabled people, researchers may take it onto themselves to become the defenders of disabled people to the extent that they even perceive disabled activists who dare speak for themselves as a threat to their status or position. It's like a 'holier than thou' attitude you find amongst some 'religious' types. Once again, by taking over the role of spokesperson for the cause of disabled people, a researcher may in fact become, as Larry would term it, a "colonizer". And the risk of presuming that you are right and the only true voice of disabled people becomes greater if you are a disabled person with visible impairments.
However, I find a certain resolution to counter the risks posed by the relationship between disability research/researcher. And that is to ensure that you take care to let go of the need to be the centre of the research process but serve instead of a mediator, or translator, and sincerely attempt to represent the voices of those who you are claiming to represent. As I read from other papers on the subject of emancipatory disability research, such research is not meant to be a project that ends there. Rather, it's a process and, indeed, the 'project' might be only the first step to achieve the transformational power of emancipatory research.
While we cannot severe ourselves from our background or roots as researcher - whether we identify as disabled or not - our role should be, I think, twofold.
On the one hand, we must strive to present the voices of disabled people in a way that is in conformity with the practice within sociological research.
On the other, we must keep in mind that any commitment we might have to the cause of the disability movement cannot come before the actual and reality that is expressed by disabled participants .
In this sense, I feel that if I continue contributing to disability activism and as a researcher, I need to let go of the need to usurp the voices of disabled people who I seek to represent, but rather take this as an opportunity to further empower other disabled people and encourage other disabled people to find value in their life and to enjoy a better quality of life. That is, I believe what emancipation is all about. That is, I think, what disability activism should be all about.
Best,
Gordon
Gordon C. Cardona
BA Hon. (Malta), MA (Leeds)
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“If you want to be happy, practice compassion.
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HH The 14th Dalai Lama (6 July 1935 - present)
On 01 Jun 2012, at 16:49, Gordon C. Cardona wrote:
Dear all,
When I became involved in disability research, I wasn’t unsure of what I was getting involved in. I have met a lot of people from various fields of life, some of which were academics or professionals. While I don’t claim to be an “experienced academic” in the field of disability studies, I felt a certain unease to realise that the vast majority, with few notable exceptions, were non-disabled.
While, there’s no denying that there has been a lot of valuable and useful research conducted by non-disabled people researchers who practice the objectives of conducting emancipatory disability that yields practical improvements in our life as disabled people, the lack of disabled researchers is, indeed, anomalous. Granted, this may be simply my perception but, unfortunately, those people who should “own” this research and, ideally, conduct it themselves remain absent from much of the research process.
This prompts me to ask why disabled people as researchers is fairly limited and, unlike other disciplines such as feminist studies, the group of interest is in the minority and has, in effect, little or no clear control. Here, I am not denying that efforts are being made to increase the number of disabled academics engaging in emancipatory and related disability research. I know, because I have benefited from such an opportunity with the University of Leeds.
Yet, I beg the questions:
To what extent does disability research which purports to be “emancipatory” can end up being a source of further oppression and alienation of disabled people?
To what extent dubious research can enforce negative attitudes or stereotypes?
To what extent does disability research conducted by non-disabled people actually representing the views of disabled participants who are took part in the research?
How far can disability research go until it becomes exploitative rather than empowering?
Why are disabled people largely absent (it seems) from actual involvement in disability research and emancipatory disability research in particular?
And, perhaps the most controversial question:
Can we have disability research without the active involvement of disabled people throughout the research process (not just in the data collection phase)?
I am putting these questions out there because as I’m currently going through compiling a report we conducted locally, I find myself asking whether I may be, indeed ‘hijacking’ the voices of participants in the process of interpreting the data. And, even if I’m a disabled person myself, whether I risk imposing my own values about disability and my identity as a disabled person within the interpretation of results.
Hope to read your comments/opinions.
Best,
Gordon
Gordon C. Cardona
BA Hon. (Malta), MA (Leeds)
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“If you want to be happy, practice compassion.
If you want others to be happy, practice compassion”
HH The 14th Dalai Lama (6 July 1935 - present)
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Date: Sat, 9 Jun 2012 05:47:56 -0700
From: Kudzie shava <[log in to unmask]>
Subject: Re: The role of disabled people within disability research: a few QUESTIONS
Dear colleagues,
Alison indeed highlighted pertinent issues regarding the exclusion of disabled people from research and employment in academic and related institutions. I would like to add that, it is even worse in most low-income countries like in Zimbabwe where I live and am currently unemployed (except that I have to rely on short-term irregular consultancy jobs so as to make ends meet), despite being a holder of a Masters qualification; not to mention the vast experience, skills and knowledge I possess in the field of disability and inclusive development. It essentially boils down to negative attitudes towards disabled people that, the general public, and especially policy-makers just simply refuse to acknowledge the fact that disabled people can work and effectively be productive. Even though there are a few examples of disabled people who are wellknown for having achieved a lot in life and working in quite prominent positions in the country, they are still adamant that these could just be exceptions (supercrips) and this cannot sway them into believing that if given the necessary opportunities disabled people can reach their potentials.
I would also want to point out that, as a disability expert and researcher from Africa, I am extremely worried about the tendency of researchers ( both disabled and non-disabled) who claim to be experts in issues to do with disability within our cultural settings. I have unfortunately realised that international agencies and organisations with a lot of money prefer to give research funding for someone from Europe for example, to conduct research in Zimbabwe, ahead of qualified people from Zimbabwe who have the understanding, first and foremost, of the social and cultural 'indigenous knowledge systems' of the country. Simply put, what this tells me is that we (in the majority world) are regarded as having inferior research capacities and therefore need some people from somewhere to come and help us make sense of something in our own backyard. So, instead of collaboration, I get an unpleasant sense of being reminded of 'colonialism'. I sincerely hope it is not.
When it comes to educational opportunities, there are so lomited opportunities for disabled people to get scholarships either in their own countries or abroad. Of course, this is quite different in developed countries. In Zimbabwe, for instance, I know of only two blind people who have a PH.D qualification (one now resideing and working in Canada and another about to complete the degree in South Africa), thanks to scholarships. However, a random internet search for scholarships meant specifically for disabled people are very few and for all those I have seen, the highest level they are for is 'undergraduate', which means the organisations that offer them seem to think that disabled people can only get to that Bachelor's level and no further. I have personally been struggling to get a scholarship to study for a PH.D since 2008, when I completed my Masters with a merit (again, thanks to a scholarship), to date. If I had managed to get a good and permanent job I would have been able to pay for my studies locally but, alas, I can't afford it. So, yes, I my struggle continues with no hope in sight.
On a slightly different note, (and I am extremely sorry for this long email--I am not a regular writer, you know!), it turns out that the more I read various writings in the field of disability and related ones, I realise that I have to increasingly pay more attention than I should normally do as a result of the way in which the whole range of terms and phrases that form the foundation of Disability Studies, are being (either deliberately or ignorantly), or worse still, nonchallantly used. Disability, impairment, Persons with Disabilities, Disabled People, seem to have reverted to each user being the custodian of the meaning within the context s/he will be writing. I may be the only one who does not quite feel comfortable with this, but, in most cases, this is how policy-makers (at least in my part of the world), manage to be evasive and noncommittal when it comes to issues to do with disability as they always prefer to deal with disability issues within interpretations of these terms and phrases that do not tamper with their political 'zones of comfort'. The use of Impairment and Disability interchangeably, which is a common feature in most writings I have read and continue to read today, leave a very bad taste in my mouth. As for me, I do comfortably, in fact, very comfortably, use the terms 'Disabled People' and 'Persons with disabilities' interchangeably due to my belief and understanding (rightly or wrongly) that, 'disability' speaks to the social, environmental and attitudinal barriers that are imposed on people with 'impairments' (due to how society is organised), leading to their exclusion from programmes, services and activities other community members ordinarily benefit from. So, I see this equally applicable to both terms. However, I occasionally get a nasty jolt in my very soul when I read of 'people living with a disability, or with disabilities', as some people in my country now choose to call us. So, in this case, Disability is the same as a condition or some kind of terminal illnes which someone has to live with.
I therefore kindly request that someone be kind enough to briefly give us a reminder of which terms can and cannot be interchangeably used; why this is so, in a sort of general way that may even clear up the confusion that this email has possibly caused.
Kindest regards,
Kudzai Shava
--- On Sun, 6/3/12, alison wilde <[log in to unmask]> wrote:
From: alison wilde <[log in to unmask]>
Subject: Re: The role of disabled people within disability research: a few QUESTIONS
To: [log in to unmask]
Date: Sunday, June 3, 2012, 3:56 AM
Dear all
The social relations of research production work to favour non-disabled researchers as employees, particularly in the current climate. Given that many disabled people face barriers in education and are likely to have a non-normative career trajectory. Late entry to HE and the likelihood of having spent intermittent periods as 'job seekers' (for example) means disabled people are less likely to present as the ideal candidate for research and other academic posts, adding to the multititude of assumptions that are made of how impairment or appearance affects your ability to do the job. Non-disabled researchers seem to be seen as a safer (and easier) bet (with no adjustments to consider), judging on the number and quality of experiences I have heard about. I'm guessing that women entering gender or women's studies are much less likely to face these obstacles (unless they are disabled).
It seems to be the more unconscious assumptions of what we expect a normal 'researcher' to be (alongside age, class and ethnicity,) which work towards screening disabled people out of research. Although there a number of very important questions to be asked about how we can speak for other people with the same or other impairments, it seems wrong to get too distracted with this if it means that we ignore the very real barriers that keep disabled people outside, or on the margins of, academic institutions.This would seem to have significant implications for the type of disabled 'voice' expressed in research literature and the ways we anticipate this to be mediated by the 'situated knowledges' of paid researchers.
Best Wishes
Alison Wilde
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End of DISABILITY-RESEARCH Digest - 8 Jun 2012 to 9 Jun 2012 (#2012-138)
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