My first degree and my initial research were in maths. I changed, partly because I was not quite good enough as a mathematician and partly because I wanted something more immediately relevant. Pure maths is relevant and at the basis of all sorts of things, but its applications take longer to come through.
Having thought about it, the ideal ethical review process would be by the relevant group of disabled people from an organisation of disabled people, in this case autistic women from an organisation of autistic people. In the case of research with people with learning difficulties, I think it is people with learning difficulties from an organisation and supported by advocates and assistants/support people of their own choosing who should be doing the ethical review, not other people making decisions about their capacity.
In terms of the social model the issue is professionals etc not being able to provide information in an appropriate format and interact with people with learning difficulties in order to get consent, not their inability to give it. Obviously there are groups for which it is very difficult to set up good procedures to get informed consent, but who may still want to be involved in research and then things become more difficult and may take a lot longer. There is a difference between legality and ethics. Following the Mental Health Capacity Act presumably ensures behaviour within the law, but is not necessarily ethical or how people 'protected' by the act necessarily want to be treated.
I have been told that I need to go through NHS Ethics, which I think is to do with the labelling of disabled people. We are automatically 'vulnerable' and 'patients'. I have tried to argue against this, but am not getting anywhere. I will however assume unless told otherwise that it is sufficient to go through NHS Ethics and I do not need to go through university procedures as well.
Ethical procedures tend to just consider research involving people (and animals to a limited, but unsatisfactory extent) and not ethical procedures and practices of other types of research. They also ignore the ethics of the nature of the research e.g. military work. They often ignore the real ethical issues and going through ethical procedures is no guarantee researchers act ethically in practice. I am not suggesting ongoing oversight of work my university committees, but ongoing oversight by the relevant organisation of disabled people might be a good idea.
Marion
On 08/03/2013 09:39, Larry Arnold wrote:
I feel having gone through an ethical process in order to research my own peer group, and having faced obstructions in one educational context accessing students who were formerly my peers that something is indeed rotten in the state of Academia. Ethical review grew up for very good reasons as there were a number of horrendously unethical experiments carried out in times past, however many ethics processes have now lost sight of the original intentions and become a self serving arse protecting ritual, intended more to protect the institution from a perverse law suit and consequent insurance claim rather than a genuine concern either for participants (researchers who themselves might be vulnerable) or the general ethical outcomes of research itself. It is to me part of the hegemony that is continuing to construct an underclass of vulnerable people, forever excluded from publishing insight from within the community. A way of retain power in the hands of the traditional authorities and that itself needs to be the subject of research. It is forgotten how investigative journalist, professional pollsters and others can happily access whoever they can find without oversight and the Universities and the NHS in particular has lost sight of common sense and reason. Not only that if ethical procedures become too difficult and too restricted they will end up being honoured only in the breach, in that promises will be made to get through the process and promptly ignored ever after. If we as a group of disability studies academics cannot accept that academia is there to be challenged in terms of it’s constructions of disability, then there is little point, we might as well be studying pure mathematics instead or the tactics of playing chess against a machine. Larry *From:*The Disability-Research Discussion List [mailto:[log in to unmask]] *On Behalf Of *Deborah Chinn *Sent:* 08 March 2013 09:27 *To:* [log in to unmask] *Subject:* research ethics and participation Hi Marion Just wanted to respond to your bit about research ethics. I agree that getting ethical approval can feel like jumping through more hoops, but it is now more of a requirement if you want to get your research published. Although ethical committees can miss the point of aspects of qualitative research I have often found that they have identified some important ethical considerations that I have missed. Their job is to make sure that researchers have thought very carefully about all aspects of informed consent, confidentiality etc. Having submitted quite a few times to ethics committees for research with people with intellectual disabilities I'm afraid that I disagree with your colleague on some counts. You certainly would not need to exclude people with "neurological deficits". You might need to spell out carefully how you are going to judge that your participants do have the capacity to give informed consent to take part in the research. This may be important if your participants have other difficulties with understanding, memory, etc as well as autism or have a label of "learning disability". You can include people who may not have full understanding of the research and its implications, but you'd need to make sure you follow the guidance relating to the Mental Capacity Act if you do so. There is helpful guidance on research ethics and learning difficulties on the Mental Capacity Act website. As for going through NHS ethics - in my opinion you only need to do this if you are going to recruit individuals through NHS sites using NHS gatekeepers. So if you want to recruit people through an NHS autism service for instance. In my experience NHS ethics committees are not too bad - at least they include lay people and practitioners. The real nightmare starts when you approach individual health trusts Research and Development (R&D) departments. If you are recruiting people through social services settings you need to go through social services ethical committees. If you are recruiting through voluntary agencies, personal contacts or online networks I think you will be fine with university ethics approval. I'm not sure what the processes are for recruiting women from different countries that probably have their own guidelines around research ethics. I would get advice from your university research ethics department on this. Ethics is a minefield! But I think it is important to make sure that you have covered all the bases. although it feels like lots of unnecessary fiddly admin before you get the research set up, having clear and ethical processes can be very reassuring for participants and means the actual research goes more smoothly. I would also go back to your colleague and ask why s/he is excluding people with "neurological deficits" from their research. It really is important neurodiverse people, and people with mental health difficulties don't automatically get excluded from research. If they are excluded that certainly would not be ethical! The only worry would be if they do not have the capacity to give informed consent. What puts researchers off is that they themselves have to make this judgement about the potential research participant. However, this should be a core aspect of research training. Researchers also need to make appropriate reasonable adjustments to make sure that participation in research is available to disabled people. Good luck!! Deborah On 7 Mar 2013, at 23:39, "m.hersh" <[log in to unmask] <mailto:[log in to unmask]>> wrote: Thanks for this. In addition to all the barriers you mention, a lot of gatekeeping occurs in academia to keep out both ideas that challenge established paradigms in ways that are threatening and people (disabled, queer, ethnic minority etc) who are also considered challenging. While some procedures etc may be justifiable, a lot of others are set up in order to maintain elites and justify and perpetuate exclusion. While I accept that there are problems in focusing on particular groups of disabled people, as an autistic woman, my research includes an investigation of the experiences of autistic women, involving interviews in UK, France and Poland and possibly some other countries. I decided I would be virtuous and apply for ethical permission. A helpful colleague had sent me copies of a recently submitted form, including consent sheet - I am not sure if this version is standard, but I was rather surprised to see something about having no 'neurological deficits' - not something I or any of the women I am wanting to research could sign. I was further rather surprised by being told that I would have to apply to NHS (national health service) ethics, as I was investigating people who had been diagnosed and were patients. I am not sure whether I am more pissed off by the stereotypes about disabled people or the complicated and unnecessary procedures, when those of my colleagues who do military work (I am in an engineering department) do not have to get ethical approval. Marion On 07/03/2013 21:45, Susanne Berg wrote: I wrote the text below earlier in anger and decided to let it sit in my outbox before I sent it off. Being disabled you tend to try to be reasonable, understanding and pedagogical - all in the pursuit of not ruffling feathers but allowing non-disabled folks or folks able to pass as non-disabled folks, do "the right thing" as if they thought about it themselves. However, I'm still angry and as, I've decided I don't really give 2 pence about what the academia think about me, I'm going to send it. Please feel free to block me or denounce me or whatever. I don't really give a monkey's arse at this point. Susanne ---- I wasn't really going to comment on this list again but this really, really p..s me off. There are so incredibly many obstacles to academic studies for disabled people which have absolutely no connection what so ever with anything remotely to do with quality of analysis or merit of academic thought or course work. Below is just a few I personally have encountered or had friends encounter: Scholarships are so far i know - they could be changed lately but i doubt it - only available to students on full-time basis. This effectively excludes loads of people whose time is eaten up by disability related issues NOT in any way connected to academic work. If i want to study in the UK i cannot take my assistance allowance with me, neither my technical aids or anything else. at the same time the UK will most probably no provide me with direct payment as they will view me as a Swedish student i.e. Sweden's responsibility. I wonder how it works in the UK where direct payments are provided locally. What if you actually want to move across "the assessment border". I will also bet you a mountain of gold against a pile of horse manure that far from all localities are accessible, that books, articles etc are not available on Braille or tape without delay, that sign language interpreters are not available for every lecture - god forbid we count the seminars etc that you might be interested in apart from your course. All this and things like it is at the same time NOTHING compared to the real problems when the "normates" and the "adaptables" are asked to adapt their cosy little system of interaction, the way lectures are structured or course work are put forth for examination. I know full well the absolute wall you face when it's a question of accommodating someone "just that little bit too complicated" and exactly how nice it sounds when you refuse with argument connected to academic discipline. "The PhD and the post-doctoral study are not arbitrary. They show a) that one has the skills to contribute to the collective and b) that one is willing and able to collaborate with others to further the discipline." I would suggest that the skills necessary to contribute and the willingness to collaborate are always defined by the normalising majority. I'll give you a social model variant of this comment. How about the skills of the academic system to adapt to enable contribution without defining the borders of the collective before putting up the walls? How about the privileged collective's willingness to collaborate with others to further their discipline? Furthermore I'll give you a piece of my mind about the comment " Great breakthroughs have come from outsiders, and always will. But on some level, they still need to know enough of the language of the ivory tower to be able to get their message through the door." Maybe these great outsiders have a right to decide if they want to be outside or inside. Maybe the academic career - oh yea the status and the money too - could have some attraction. Maybe they have a right to be something more than just another disabled back to be used as a step ladder for those who manage to squeeze their corporeal frame through the door. Disability studies has come a long way since the days of Mike Oliver and Vic Finkelstein - not to mention Paul Abberley ... not in a productive and good manner. So to each one of you making your career on disabled peoples experience I ask today: What have you done to tear down obstacles for others so they can enjoy your privilege? And Gareth, for f..sake read Goffman and deduce something useful. And if not, at least be a little bit understanding of people who aren't capable of passing as "non-disabled" enough. Susanne Berg ........................ Skarpnäcks Allé 41, 12833 Skarpnäck, Sweden hem 08 - 15 73 54 mobil 070 - 515 7356 [log in to unmask] <mailto:[log in to unmask]>-----Ursprungligt meddelande----- Från: The Disability-Research Discussion List [mailto:[log in to unmask]] För Gareth Millward Skickat: den 7 mars 2013 17:19 [log in to unmask]" target="_blank">Till:[log in to unmask] <mailto:[log in to unmask]>Ämne: Re: New Disability Studies M.A. There are myriad problems with what I'm about to say. So, all the usual caveats about "truth", etc. apply. I appreciate that the culture of academia it is still a barrier to people who will not or cannot conform to its rules of behaviour and arbitrary conditions for entry which affect many queer and subaltern communities. But I feel like I at least have to offer some defence of the academy, because it's not as simple as you appear to be making out. The reason why Western education follows the path that it does is because it "disciplines" people. This is problematic, but it is also a strength. It allows people from the same or related disciplines to converse with each other in a common language. In my field, history, we don't expect students to read, produce essays, reference their sources, and think rationally and critically about texts for the sake of it; it's the key to the discipline. Work needs to be verifiable and needs to be written in a way in which it can be processed. This is restrictive, certainly; but I wonder (genuinely) how else any culture can operate. If we can't communicate with each other, then it makes all of our work redundant. We may have to adapt the ways in which we communicate, but we need common reference points. These will always discriminate against and exclude certain people. Again - how do we solve this? (This is a genuine, and intriguing open question.) In order to keep an institution running, certain barriers to entry have to be crossed to ensure people can converse with one another within that community. The PhD and the post-doctoral study are not arbitrary. They show a) that one has the skills to contribute to the collective and b) that one is willing and able to collaborate with others to further the discipline. Great breakthroughs have come from outsiders, and always will. But on some level, they still need to know enough of the language of the ivory tower to be able to get their message through the door. I know there are many, many problems with this. The PhD scheme, for example, is prohibitively expensive, and requires skills which are not necessarily central to producing, synthesising and sharing knowledge. However, I think we can get the Western academy to adapt better to the needs of those who it has excluded far better by engaging in the debate. Over the past 50 years, it has been far, far more willing to do this than many other areas of capitalist society. We all know our social models and queer theory. We all know the problems of academia. But we must also surely know that cultures like this don't just spring up arbitrarily. There is a reason why the academy behaves the way that it does. How should it change? I'm not asking this out of anger or spite - I'm genuinely intrigued to hear your thoughts. I'm naive, I know! I'm in a privileged position in being able to mould myself to adapt to their (our?) game. But to me, it just seemed these comments have been ridiculously reductive of the whole university system. You may well be right. But I like to have balance in a debate! Gareth Gareth Millward PhD Student Centre for History in Public Health London School of Hygiene and Tropical Medicine On 07/03/2013 13:39, Larry Arnold wrote: On a more serious point, is there a way of gaining a disability studies MA without actually studying? I am not talking about degree mills but whether it is possible for a minimum fee to sit exams, submit a dissertation or whatever based upon private knowledge and hitherto study without the overheads of tuition. Looking for some way of keeping my hand in when I complete my PhD later this year but without the exorbitant cost that has been "crippling" me these last 6 years. I'd love to find a post doctoral position, but it isn't on is it? me being me, and the specifications being what they are usually for a face that fits. Larry -----Original Message----- From: The Disability-Research Discussion List [mailto:DISABILITY- [log in to unmask] <mailto:[log in to unmask]>] On Behalf Of Larry Arnold Sent: 07 March 2013 09:04 [log in to unmask]" target="_blank">To:[log in to unmask] <mailto:[log in to unmask]> Subject: Re: New Disability Studies M.A. Would I really have to go through all that palaver and expense? Why can't you just give it to me anyway, I am more than competent to teach there, but for the status quo. Oh I forgot, Universities are not about learning or knowledge, they have a living to make. Larry y logging in to this web page. ________________End of message________________ This Disability-Research Discussion list is managed by the Centre for Disability Studies at the University of Leeds (www.leeds.ac.uk/disability-studies <http://www.leeds.ac.uk/disability-studies>). 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