'Our Life, Our Say': An evaluation of a young disabled people's peer mentoring/support project

Julie Bethell, edited by Mark Harrison

A good practice guide based on an evaluation of an action research project designed to support young disabled people move into independent adulthood.

This good practice guide is based on the evaluation of an action research project designed to support young disabled people move into independent adulthood. It draws on the Young Disabled People’s Peer Mentoring Project based within Greater Manchester Coalition of Disabled People (GMCDP). It is based on the views and experiences of young disabled people, their friends, families and the professionals, organisations and services who support them. Designed to be accessible to everyone interested in setting up similar projects, the guide aims to:

  • Advise young disabled people and others on how to start their own project;
  • Highlight the benefits of self-organisation for youth groups;
  • Look at the values and practical resources needed to make sure groups succeed;
  • Help support workers and organisations let go of control and involve young disabled people at every level of organisations;
  • Show workers and organisations how to facilitate young disabled people’s self-directed groups.

The version available here is 16pt large print. The guide is also available in 20pt large print; floppy disc (Word); CD (Word); Braille and audiotape - these formats can be accessed by clicking the 'Buy From Distributor' button at the top right of this page.  Alternatively please contact Pavilion Publishing on 0870 161 3505 or www.pavpub.com if you have any queries about these accessible formats.

Summary

Summary

Young disabled people face particular barriers in growing up and becoming independent as their experiences of direct and indirect discrimination may lead to a lack of self-confidence and isolation from others of the same age and from the opportunities non-disabled young people enjoy. The Young Disabled People's Peer Mentoring /Peer Support Project developed a range of activities to address these needs over a two-year period, building on previous work. The project was evaluated with the help of both adults and younger disabled people. The evaluation found:

  • Barriers to independence can be reduced by supporting young disabled people to meet and work together on common issues to learn from each other and share experiences.
  • The opportunity for young disabled people to direct projects themselves, with support from other disabled people, improved the understanding and independence of the individual young disabled people involved and acted as a model for others of what could be achieved.
  • Young disabled people preferred projects which offered a wide range of activities and allowed them to use these at their own pace according to their needs at the time. Activities in the project ranged from socialising to campaigning.
  • Linking young disabled people in one-to-one supportive relationships could be a valuable experience for both partners. Young disabled people who felt ready to work with their peers in this way and to share their experiences benefited from training in this approach.
  • The project found that traditional peer 'mentoring' could be too formal and was less effective , especially where young disabled people knew each other well and were becoming friends. Some young people benefited from the more flexible model of peer 'support'.
  • Most young disabled people found that training in the 'social model' of disability had a profound effect on their outlook.

Background

The Greater Manchester Coalition of Disabled People (GMCDP) is an organisation totally controlled and run by disabled people for disabled people. Over the past twelve years GMCDP has worked to develop projects for young disabled people, reflecting their understanding of the discrimination they face. The Young Disabled People's Forum was created by GMCDP as a means of offering opportunities for young disabled people living in the Greater Manchester area to:

  • meet with other young disabled people of a similar age, have fun, share experiences and make friends;
  • obtain information and support, and gain the confidence to develop skills to make choices and take control of their lives;
  • understand disability as a civil rights issues, with support and guidance from within an organisation committed to the principles of disability equality;
  • become involved on a consultative level with various policy-makers and service providers, to identify barriers and create meaningful change.

Over this period GMCDP developed a range of specialist projects such as an Independent Living Skills Programme, The Young Disabled People's Resource Centre, Outreach/Advocacy Project, Drama Consultation Group and a Wednesday weekly youth group meeting.

In June 1999 the Young Disabled People's Peer Mentoring Project was funded by the Joseph Rowntree Foundation. Manchester City Council and Manchester Health Authority funded activities which took place in the 'Forum'.

The idea for the Peer Mentoring Project came directly from young disabled people within GMCDP's Young Disabled People's Forum. It was designed to give them the chance to look at their experiences and hopes, through the example of other young disabled people who were setting up their own homes, managing their own personal support, having relationships and/or going to work.

The project took the innovative approach of combining the values and role models of mentoring with those of peer support. In doing this the project aimed to create ways for:

  • young disabled people to link with other young disabled people (as mentors) because of their common understanding and experiences;
  • young disabled people, who have taken control and are already building successful lives, to learn how to support others and in this way develop their own knowledge, skills and confidence;
  • peer mentoring to give priority to building up young disabled people's self-esteem and confidence;
  • getting the positive messages from the project out to all those involved in supporting young disabled people.

Over 40 young disabled people, aged between 15-25, became actively involved in the project and 30 other young disabled people phoned project workers for advice or information.

Setting up the project

Project workers' challenges in creating the project included:

  • negotiating with family members and/or workers of residential institutions;
  • finding accessible venues and transport which was safe and reliable;
  • organising information sessions/presentations etc on issues young disabled people wanted to know more about;
  • ensuring all information was in accessible formats, e.g. Braille, large print or tape;
  • finding appropriate support workers, British Sign Language interpreters and lip speakers, as and when required.

Just getting the meeting place made a huge difference to the lives of many young disabled people. One young woman explained why she came along:

"One, to get out of the house. Two, to meet with other people I can relate to, in an environment I can relate to, where I'm not going to get harassed by anybody else. Coming here can be a break from the stress."

The social model of disability

The GMCDP's work is rooted in the 'social model' of disability (see Box) and a training course on this model was offered to all the participants in the peer-mentoring project.

Box 1: The social model of disability
The ‘social model’ of disability originated in the early 1970s, from a group of disabled people who wanted to challenge the ‘medical model’ of disability, which viewed disabled people as inactive and in need of charity, treatment and/or change in order to fit into society. The social model says it is the barriers arising from social attitudes and organisation, including the environment, which exclude disabled people. These barriers have consequences for disabled people in terms of poverty, exclusion from mainstream activities, lack of physical access and opportunities to work, education, as well as the denial of choice and civil rights. For young disabled people, this experience of all-round discrimination can lead to feelings of ‘internalised oppression’, with devastating effects on their self-esteem.

Young people found discussing the social model of disability with project workers who shared experiences was overwhelming at first. This changed as their attention turned away from their own impairments towards the attitudes and organisations they encountered in the wider society.

"I think I've learnt a lot, in terms of the social model of disability, the way to deal with the negative aspects, opinions and discriminative nature of society that makes us disabled people. I've been empowered to inform others, because in fact it's not about myself being impaired that's the issue, it's more about the way society needs to change to be more inclusive, to make everyday life for disabled people more accessible. I think I wouldn't have been able to make that statement two years ago. I think it's all to do with the whole nature of the [Young Disabled People's] Forum. It makes you think in different ways really. Makes you explore different things. Not having to be concerned about being disabled, because you know that when you are here in this building you're not in fact disabled."

As a result of this training, some of the young disabled people set up a campaigning organisation called 'Barrier Free Zone' to challenge the discrimination they faced. This was a pivotal point in the history of the project's work with young disabled people, marking the point at which they gained enough confidence in themselves to begin demanding equality, control and involvement in many areas of the project.

Peer mentoring/support

The concept at the heart of the Peer Mentoring Project was that some young disabled people had made considerable strides in achieving a degree of independence in their living arrangements, training and jobs. This success made them role models for other young disabled people and a source of useful information.

Project workers wanted to create ways in which this knowledge and experience could be shared with other young disabled people to the benefit of both.

Peer mentoring involves training and a structured, private, one-to-one relationship with another young person. It is used widely in education and vocational training with young people at risk - including young disabled people.

The project initially used it as a way of sharing experience between young disabled people, but found it had to be modified considerably in practice. There were a number of reasons for this:

  • Many of the young disabled people in the 'Forum' knew each other before getting involved in the project, or else became friends through the project. Attempting to formalise relationships that had grown naturally was largely unworkable.
  • Traditional peer mentoring involves a degree of formality and often a hierarchy of knowledge and experience between mentors and those they are working with, which did not fit with the values of the disability movement or ideas of the project. However, a small number of young disabled people from the 'Forum' had also been involved in other peer mentoring initiatives, and had found them to be valuable experiences. How much they benefited depended on issues such as: how well the project was facilitated, worker/management commitment to self directed initiatives, and to the principles of the disabled people's movement as well as a commitment to equality issues.
  • Many young disabled people found that it was the collective membership of the Young Disabled People's Forum and particular projects such as Barrier Free Zone and the drama group, rather than a one-to-one relationship, which provided them with their most valuable and productive experiences.
  • As the project developed, concepts involving language and assumptions altered. For example, many of the young disabled people used the term 'peer support' in favour of 'peer mentoring'.

This strand of the project was renegotiated during the funding period and assumed the following form:

  • Some young disabled people with appropriate experience and confidence trained as 'peer mentors', giving them an understanding of confidentiality issues and ways in which they could deal with their peers on sensitive issues.
  • The trained mentors were paired with other young disabled people and met with them privately to discuss issues of mutual importance.
  • This process was not seen to involve a hierarchical relationship between unequal partners, but involved a concept of mutual peer support, to which they both contributed.
  • Other young disabled people obtained one-to-one support more informally, as and when they needed it, from project workers and other members of the Forum.

Outcomes

The young disabled people who had been trained and shared their experience with their peers felt they had obtained considerable benefits from the process.

"I think it's great. It's a chance to pass on some of my experience and confidence and I would have liked it if it had happened when I was younger when I needed it."

Young disabled people identified the value of a one-to-one relationship of this kind as providing the opportunity to explore the issues they regarded as important with someone:

  • with the same background;
  • of the same age and sex;
  • with more experience of understanding the issues;
  • able to provide information from a disability equality perspective, to support the other person to make decisions and to help build up self-esteem.

Confidentiality and trust remained central for young disabled people to make sure the relationship developed well.

The project's impact

The young disabled people who came along to the weekly meetings found:

  • an informal place to meet other young disabled people;
  • a place to talk with and consult project workers and older disabled people;
  • training in the social model of disability;
  • membership of active groups such as Barrier Free Zone and the drama group;
  • membership of young men's and young women's discussion groups;
  • opportunities to participate in one-to-one peer relationships;
  • opportunities to volunteer to help run aspects of the project.

For a number of young disabled people coming new to the project there were many benefits:

  • For some, this was the first real chance to be away from their home and family surroundings, and to mix with others of similar age and circumstances. They were coming into a fully inclusive and accessible setting, against previous experiences of isolation and exclusion.
  • The training course on the social model of disability gave many their first chance to make sense of their situation in a way that supported their development, rather than putting them down.
  • Talking with project workers and other young disabled people gave them ideas and information about ways in which they could move on in their lives and start to achieve goals.
  • Taking part in one-to-one relationships and single sex groups gave them the opportunity to discuss more personal issues with supportive, knowledgeable peers.
  • As young disabled people became more confident, they were able to start to express their ideas and beliefs collectively through campaigning groups such as Barrier Free Zone and the drama group and develop new skills through the many opportunities for voluntary work provided by the project.

Participants' perceptions of the value of the project reflect the comprehensive impact it had on their personal feelings, understanding, skills and hopes for the future:

"Being together is powerful, understanding the issues, supporting each other."

"More self confident and independent."

"Understanding discrimination in all its forms and having the skills and confidence to challenge it."

"My world is opening up for me, I can now try to do anything I want."

About the project

The project was funded for two years and evaluated by a small team of younger and older disabled researchers and advisors. Twelve young disabled people volunteered to participate in two sets of interviews as evaluation. The first set of interviews, at the beginning of the project, explored young disabled people's expectations and why they came along to the sessions. The second set took place towards the end of the project to work through their experiences and the impact it had made on their lives.

Young disabled people who joined the Peer Mentoring Project had the chance to join all the activities offered by the Young Disabled People's Forum, as well as to take part in a supportive one-to-one relationship with another young disabled person, either as a trained peer mentor/supporter, or as the person being mentored/supported.

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