Tackling Disabling Practices: Co-production and Change

In this blog Sue Turner discusses a  three year research project by the Norah Fry Research Centre, School of Policy Studies in partnership with Disability Rights UK

The Equalities Act 2010 requires public sector organisations to put reasonable adjustments in place for disabled people, so that they will not be disadvantaged when accessing services. Unfortunately we know that this does not always happen. Why is this and what can be done about it?

Broadly, these are the questions the ‘Tackling Disabling Practices’ project is trying to answer, recognising that top down policies do not always work, and using different theories of change to understand what is happening. The project is big, consisting of five different strands through which questions about what leads to change at a practice level can be asked, and crucially how disabled people are involved in, and are part of making change happen.

Briefly the strands are:

1. Improving everyday interaction between people with dementia and their support workers; also young people with learning disabilities who are starting to employ PAs.
2. Changing practices in universities which unintentionally marginalise disabled students and disabled staff
3. How to shift health care practices by making reasonable adjustments for disabled people using hospital services.
4. How to develop better interagency support for parents with learning disabilities.
5. How disabled people can take direct action to develop services and affect commissioning practices.

I am involved in strand three. With regard to this strand it is worth remembering that the NHS Contract includes the requirement for service providers to carry out an annual audit of compliance with providing ‘reasonable adjustments for service users, carers and legal guardians who do not speak, read or write English, or who have communication difficulties (including hearing, oral or learning impairments’ (NHS England 2015, p.14). Work is currently focused on gathering information from an analysis of audit and inspection documents. There will also be a survey of patient experience leads, Healthwatch representatives and disabled people and their families, as well as face-to-face interviews with disabled people. The information gathered will inform two workshops for representatives from NHS hospitals and disabled people including people with learning disabilities who have used these hospitals’ services. The first workshop will focus on identifying strategies and approaches that could be taken to improve the delivery of reasonably adjusted services, and will ‘buddy up’ participants for peer support purposes. The second workshop will build on what people have learnt from implementing these strategies and approaches, and identify learning that could usefully be shared more widely.

So it is early days for this project, but I wanted to share this with you as I am sure that getting reasonable adjustments embedded in day to day practice is something that many of you will be grappling with. If you have found strategies that work, or have audited the provision of reasonable adjustments in your own organisations we would love to hear from you. Please contact Stuart Read (stuart.read@bristol.ac.uk).

 

Sue Turner, Learning Disability Lead at the NDTi

 

Reference:

NHS England (2015) NHS Standard Contract 2015/16 Service Conditions. Available at: http://www.england.nhs.uk/wp-content/uploads2015/03/14-nhs-contrct-serv-conditions.pdf

Feminism, learning disabilities and the importance of research

The inspiration behind this blog is the release of the movie “Suffragette”.

I had been considering a number of ideas for this blog but listening to a BBC Radio 4 interview made me realise this was the subject I wanted to write about. Feminism is a subject which I feel strongly about, and through this subject I want to start a necessary and important conversation about feminism and women with Learning Disabilities.

Being a woman in today’s society is hard.  As a woman I am often deemed as less than a man, not as strong, not as brave, not as intelligent, not as worthy.  Often I am told to “grow balls” to “man up”, it infuriates me, and it makes me feel less than a person. If people who use those phrases really examined what they were saying – would they still use them? Other times I worry about my appearance, my weight, do I have too many wrinkles, am I too pale, am I too grey, and then I worry that I have become superficial?  As women we are constantly under scrutiny and bombarded with images of how we should look act and speak. As a woman I spend so much time and money investing in making myself look and feel right so that society becomes more acceptable of me: I internalise my ideas from socialisation.  This makes me angry at myself and society, resulting in my feeling frustrated and angry.

Last year when considering topics for my dissertation I was incredibly interested in learning about the experiences of being a woman with learning disabilities,  knowing how unequal society is for women.  When I entered the world of learning disability nursing I was very naive. My journey resulted in meeting many women who showed me how hard the world can be for a woman with learning disabilities.  I met women who had been abused, I met women who had been marginalized throughout their whole lives,  I met women deemed unable to have a job.  Women who were told they were unable to raise their own children and women who had to fight to have a choice of where to live.  I met so many women who had things happen to them, because they were a woman. There are women living with uncertain futures, in the hands of people who don’t know them or what their wishes, hopes and dreams are.  This, for me, was one of the hardest lessons of learning disabilities nursing.

Whilst seeking research on the experiences of being a woman with Learning Disabilities, I found very little available: there is some but more is needed.  I would like to hear the stories of women with learning disabilities.  I want to be able to empower all women to have an equal and fair access to society, and to be able to make choices about their own futures.  If a woman has been a victim of sexual abuse and is afraid of men, how can it be right to put her in a home living with and being looked after by men?  Where are her rights?  But how can I empower women without understanding their stories, their lives?

I am planning next year to start a Masters in Disabilities Studies, and then move onto a PHD.  I believe through research, we can reach out to women with Learning Disabilities to support, enable and empower them to have the tools to help them live in a fairer and more just society, to be able to stand up to, and recognise, gender inequality.  To help them have greater control over their lives and their ability and belief in themselves that they can be in control of their future.  Through research I truly believe that we can start to tackle these issues, that we can learn from each other and teach one another coping mechanisms.  Research can show us the journey so far, and through research we have the ability to make changes to make society more equal and just for women with learning disabilities.

Helen Rose

November 2015