User:Gusdeadman/Rowen Jade

Rowen Jade (3rd December 1969 – 2nd September 2010) was a leading campaigner and government advisor in the field of disability rights. She died, aged forty, of a chest infection in hospital in Leicester while on holiday.

Life and Work
Born Sharon Mace, to father Bob and mother Janet Mace, Rowen Jade had Spinal Muscular Atrophy - SMA and from the age of 14 she used a chaise-longue-style wheelchair and required 24 hour care. Despite this she went to a mainstream school, Lord Williams's School in Thame as the only disabled student. Following successful exam results, between 1988 and 1991 she attended Oxford Brookes University achieving a double first degree in Law and English. After leaving graduation she specialised in the area of inclusion for disabled people in mainstream education and started work for the Alliance for Inclusive Education in London. During the 1990s Rowen worked for several Centres for Inclusive Living and joined the campaign to promoite independent living for disabled people. She was a freelance consultant in disability equality for almost 20 years. In 1994 she came out as a lesbian and in 1996 changed her name from Sharon Mace to Rowen Jade.

In 1999 Rowen co-edited the anthology Bigger than the Sky with Michelle Wates, a collection of short stories by disabled women about their experiences of being parents. The book was used as reference source for the United Nations Office of the High Commissioner for Human Rights paper “Human Rights and Disability - The current use and future potential United Nations human rights instruments in the context of disability” in 2002. She contributed her own story on conceiving, with her partner, Jaz Ishtar, a daughter Olivia Jade, born in 1999. The couple were refused IVF treatment by the NHS because they were lesbians. She contributed to many discussions on and offline on the subject of disability and parenthood.

After moving to Bristol in 2000 to join WECIL (West of England Centre for Inclusive Living) Rowen pioneered the setting up of a Personal Assistance Support Scheme for disabled teenagers in the city. In 2006 she became a founding member of Not Dead Yet UK which campaigns against euthanasia and assisted suicide.

In 2007 she became co-chairperson of Equality 2025 and in 2008 became Chair. Equality 2025 is a non-departmental public body that advises the British Government on disability through the ODI Office for Disability Issues with the aim bringing about equality for disabled people in Britain by 2025. She was re-appointed Chair in April 2010.

Rowen's views and contributions were requested for the;
 * Disability Equality Forum – Key note speaker in December 2007
 * Judge (Main Panel) RADAR People of the Year 2009 -

In order to influence the policies of the Conservative Party and the prospective government, Rowen spoke at a New Statesman event at the party conference in October 2009 entitled “Personalised care services...who knows best? Real freedom or care on the cheap?” Rowen’s opinion was sought by the media not just on disability but also on patient care in the NHS and she took part in a roundtable discussion for The Guardian in May 2010.

Rowen also used her experience on various independent committees including;
 * The Disabled Peoples Transport Advisory Committee.
 * Disabled people's representative: on the Bristol Partnership Equalities Action Group -

Rowen Jade’s influence on Labour government's policy on disability is shown by;
 * “Whose Voice Is It Anyway” cited in Department for Education and Skills (United Kingdom)' outline for the first Disability Equality Scheme in 2006.
 * In September, 2006 the British Government appointed Rowen as a member of the Independent Living Review expert panel in order to help shape the Independent Living Review which was intended to identify practical solutions to support disabled people in living independently.
 * James Purnell, Secretary of State for Work and Pension quoted her in his introduction to the 2008 Report on Disability Equality.
 * The National Equality Panel invited Rowen to present her views on equality for disabled people at the first seminar it held in March 2009.
 * The Social Security Advisory Committee invited Rowen to attend a meeting in February 2010

Posts Held

 * 2008 - 2010, Chair of Equality 2025
 * 2007 – 2008, Co-Chair of Equality 2025
 * 2003 -2007 Youth Independent Living Worker, West of England Centre for Inclusive Living
 * Owner of Different Perspectives

Publications

 * Bigger than the Sky - Co-editor with Michelle Wates, 1999
 * Whose Voice is it Anyway; Talking to disabled young people at school - Co-authored with Christine Wilson1999 - The Alliance for Inclusive Education
 * Creating Independence and Inclusion: Youth Personal Assistance Support Scheme Good Practice Guidelines, published by The National Youth Agency in partnership with WECIL (West of England Centre for Inclusive Living). 2003