Mark Harris - Your Voice Development Officer
The Your Voice Advisory Committee is made up of 15 people who are registered ASBAH service users. Members of the committee meet up to six times a year in a fully accessible venue. In addition to the regular meetings, they also communicate individually or in small groups over the telephone between the main meetings. The members of the committee are selected by Your Voice members and serve a three year term.
Meet the Committee members...
Carole Armour - Leicester
My involvement with ASBAH spans over 35 years: firstly with Sussex ASBAH and then as a committee member of Leicester ASBAH.
I have been on the Steering Group of Your Voice since 1993 and helped to arrange the Choice, Independence and Control (CIC 2000) conference. I am a past Chair of Your Voice. I organized and helped to run the Have Wheels Will Travel event in Leicester in November 2008.
In September 2005 I was elected onto the ASBAH Board of Trustees and I am enjoying every minute of it.
My hope for the future is to continue broadening the involvement of members of all abilities within both Your Voice and ASBAH.
Michael Bergin - Preston, East Yorkshire
Originally from Dublin, I have spina bifida and was elected at the last election to YV. Some of the things I have done in the past three years:-
Arranging a conference with a colleague in the UK. Representing Your Voice at the International Conference in Portugal in 08, and let me tell you that was an eye opener.
Getting the Your Voice Your Choice newsletter going.
Keeping members informed.
During the last three years I have missed only two meetings due to ill health so I am committed to doing my best for everyone.
Jon Burke - Huddersfield
I have been involved in Your Voice since it began and am a previous Chairperson of the group. I currently work for a national charity advising local organizations on health and social care issues. I have also represented ASBAH on the board of the International Federation of Spina Bifida and Hydrocephalus for 5 years.
I will ensure that the needs and wishes of people with spina bifida and/or hydrocephalus are taken seriously within ASBAH and that the group provides the kind of training and support that members tell us is so important.
Lisa Cain - London (Redbridge)
In the last 3 years I have helped organize events in Manchester and Birmingham and run various workshops. I’ve also attended conferences on behalf of Your Voice and been Chair.
I’ve been a Trustee for 6 years and Lead Trustee for London and South for 4 years. I’m a member of a disabled ski club, I work part-time and I’m a member of Redbridge Mobility Forum.
I feel it’s important for members to have their say in how things are organized and to influence policies and also lead by example. I would like to help Your Voice influence ASBAH and to become more inclusive within the organization. Also broaden my horizons by meeting new people.
Geraint Catherall - Leicester
Since gaining employment in Leicester in 1997 I have been living independently. This has given me a wide experience of the problems that can be faced by a young adult with hydrocephalus, in gaining independence, being self sufficient and managing one’s affairs. Having been fortunate enough to go to university this has also given me an insight into the difficulties a young person with hydrocephalus can face in higher education.
As someone who works full time there are a number of difficulties that I have had to overcome due to my hydrocephalus. I feel that with the life experiences I have had I can contribute to Your Voice and share my experiences with others, and maybe be of help to others.
Clair Louise Coverdale - West Midlands
I enjoy new challenges as well as finding out new ideas and concepts to enable others to benefit from them. I feel strongly about rights for people with disabilities and would like to contribute to changing attitudes. I am confident using Public Transport. I am also a member of my local ASBAH Connect group.
Being accepted on to the committee would help me to improve the personal skills that I find difficult, such as self-confidence, communication skills, making new friends and making my point heard. I feel that it is an opportunity to make a difference.
Amar Raj Singh Dugal - London (Edgware)
I am pleased to be a member of the Your Voice committee because I want to share my experiences, gained by living with spina bifida and hydrocephalus throughout my life, with others. I am keen to learn about other people’s experience and how they are managing having the same disabilities. I consider myself as being helpful and understanding, having patience to listen to others and to give my advice if required.
Since I joined Your Voice I have learnt a lot about spina bifida and hydrocephalus and I have also gained self confidence in travelling alone and doing certain things on my own.
I would like to help and contribute towards decision making, planning of events, meetings and venue selection. I am in a position to attend meetings wherever they are held and also help in computer work if required.
Amy MacGibbon - London (Islington)
I have had hydrocephalus from birth and I believe that hydrocephalus and spina bifida and the effects should be more widely known about (in employment in particular) and with people in general. I believe that employers and teachers should be given more advice and made aware of the effects of hydrocephalus and spina bifida. I will make suggestions to Your Voice on skills which could be offered to sufferers to help their confidence in employment and with general skills.
Paul Manning - Ceredigion, Mid Wales
I am from Ceredigion, Mid Wales; I have been on the Advisory Committee for 3 years.
During this time, I have been both Vice Chair and Chair. I have helped to organise a couple of events.
Since joining the committee I have become a National Trustee and now am Lead Trustee for Wales. I have become Chair of ASBAH Cymru recently.
I will continue to represent the growing Your Voice membership to make sure our voices are heard in services and policies for people with spina bifida and/or hydrocephalus
Kevin Ogborne - Bristol
I feel I will bring knowledge to the committee, due to the fact I have done and experienced lots of different jobs.
I currently go into schools to talk to children about disability and to tell them my life story.
I have run training sessions for employees of Remploy and owned my own business.
Currently I am in a wheelchair due to my back hurting more when I walk and I have had changes made to my home e.g. wet room.
I also go to the gym and play wheelchair basketball.
I feel that being on the committee will give me satisfaction that I am able to pass my life knowledge onto others and that I have helped them in anyway possible.
Liz Potts - East Cheshire
I live in East Cheshire with my husband and two sons, I have spina bifida/hydrocephalus and I am a full time wheelchair user.
As a committee member, I believe that it will be a fantastic opportunity to engage with others in making decisions that will hopefully enrich the lives of other people with spina bifida and/or hydrocephalus.
I work part-time both as a paid employee and a volunteer for The Disability Information Bureau and I am also an elected volunteer member for a local involvement network, primarily looking into health and social care concerns within the public sector.
ASBAH and Your Voice have helped me immensely and I consider it a privilege to be able to put something back into the organisation and whilst doing so meet new friends along the way.
John Richards - Milton Keynes, Bucks
Having spina bifida and arrested hydrocephalus resulting in visual impairment as a child, and more recently normal pressure hydrocephalus, I feel that I would like to pass on some of my experience to other people.
Following a period as a shorthand-audio typist, I re-entered full-time education, qualified with a degree and Diploma in Social Work. I have been employed in hospitals, the community and latterly with ASBAH as an Area Adviser.
I have spent a great deal of time involved in charitable organisations, both for physically disabled people, and people who are visually impaired.
I have a wife and son, and enjoy following: cricket, reading, visiting the theatre and places of interest, and eating and drinking out.
My mission is to ensure that people with disabilities are given opportunities to obtain the skills necessary and the means to achieve involvement in mainstream society.
Alison Helen Robinson - North East England
I have been working in the voluntary sector for the past 30 years as a Trustee, honorary secretary, treasurer, and Chairperson of various groups for the Disabled Drivers’ Association and more recently Mobilise.
I have vast knowledge of physical disabilities, mobility and care matters and I am looking to slightly change direction. I feel that my experience will complement the Your Voice Advisory Committee
I currently work part-time for the Ministry of Justice on the Disability Appeals Tribunals as a care member which I have done for 18 years.
My hobbies are driving, sit-skiing, family history and embroidery.
Louise Turner - Ottery St Mary, Devon
Iam 26 years old and currently studying towards two degrees, one in Sociology and one in Voluntary Sector Studies. During my studies I was diagnosed with hydrocephalus and had a 3rd ventriculostomy. I quickly learnt that living with a disability which is not always visible can add additional challenges.
I would like to help in the future of Your Voice by using my experiences, positive and negative ones, to help future developments. Hydrocephalus has encouraged me to achieve things in life and make a difference. I have 6 years experience of committee work and hope this will help me to play an active role on this committee.
Paul Zickel - London (Haringey)
As people with disabilities in a period of welfare reform we are entering unprecedentedly challenging times. A strong and clear voice articulating our needs and views has never been more important. A vibrant Your Voice is therefore essential, and our new Chief Executive supports this.
I am a regular and active participant and greatly value continued involvement. I chair the Civil Service Disability Network, meeting regularly with Ministers, ODI, EHRC, RADAR Trade Unions, All Party Parliamentary Disability Group and others who drive the disability agenda to articulate our views and needs. Being part of Your Voice feeds into this. Whenever possible I use these meetings as an opportunity to voice the views and concerns of Your Voice and ASBAH too.
