ON November, 2, 2012 at Mulungushi Conference centre, I graduated with Doctor of Philosophy Degree (Ph.D) in Disability Development and Management and my final thesis was an investigative research study undertaken in September 2012.
The study aimed at determining whether ‘Nothing about Us, Without Us’ slogan is purely a disability advocacy to which is only used by persons with disability and helped in mainstreaming disability programmes in the world.
The study also looked at challenges faced by Disabled persons in accessing social services in selected institutions in Zambia and I also looked at best practices in South Africa, Namibia and Swaziland.
I was lucky to be supervised by respected rehabilitation expert professor Lewis, PhD, from University of Pittsburgh School of Health and Rehabilitation Sciences Department of Rehabilitation Science and Technology in the United States of America
To start with, let me say that it’s important to understand the principle behind ‘nothing about us without us’ and appreciate its aim.
I looked at lessons and believe that there is a lot of misrepresentation of this slogan with many effects or challenges, in investigating the meaning of Nothing about Us, without Us slogan, I first looked at the history of this slogan.
The term in its English form came into use in disability activism as far back from 1990s way back before the Zambian Government repealed the disability Act.
James Charlton relates to this slogan for the first time when he heard the term used in talks by South African disability activists Michael Masutha and William Rowland, who also heard it being used by an unnamed East European activist at an earlier international disability rights conference and In 1998, Charlton used the saying as title for a book on disability rights.
Secondly let me point out clearly that Nothing about us without us is not a Disability slogan but it has being used by disability rights activist to communicate a clear message that no policy should be decided by any representative without the full and direct participation of members of the groups affected by that policy.
Nothing about us, without us is an advocacy tool for all Human rights activist which includes national, ethnic, religious, disability-based, youths, women or other groups that are often thought to be marginalized from political, social, and economic opportunities within the society.
It must not be used as a Disability campaign tool to mean that only Disabled can work for Disability related institutions or programmes or Associations because it works against real mainstreaming of disability issues and promotion of inclusive approached to disability.
In 2004 the United Nations international day of Disabled persons theme was nothing about us without us and to observe this important day the world focused on active involvement of persons with disabilities in the planning of strategies and policies that affect their lives.
The slogan “Nothing About Us Without Us” relies on this principle of participation, and it has continued to be used by Disabled Peoples Organisations throughout the years as part of the global movement to achieve the full participation and equalization of opportunities for, by and with persons with disabilities.
In understanding this slogan in the Zambian context the message is those involved in governance should involve disabled people at policy formulation and implementation level and not meaning that only disabled can represent disabled people and this is a clear demonstration that anyone with passion and the heart for the disabled can serve disabled people in Zambia for, by and otherwise.
However, few disabled people in Zambia have misused this slogan to mean that Zambians are not disabled, they do not understand challenges disabled people go through and cannot effectively represent them.
The slogan promote active involvement of persons with disabilities in Zambian politics and other developmental programmes as a true meaning of nothing about us without us and Zambia has been implementing this slogan well since independence despite at a slow pace such as involving disabled people in national constitutional conference (NCC),Mungomba Constitution Review Commission, citizen empowerment commission which has clearly proved to be an excellent example of how the principle of full participation can be put into practice.
It has contributed to the development of truly inclusive society, in which all voices are heard and persons with disabilities has helped shape a better Zambia for all persons with disabilities.
The Government has responded well to equalization of opportunities for disabled people when it repealed the Handicapped Act of 1968 which created Zambia Council for the Handicapped which was providing sheltered employment to persons with Disabilities through farm centres and replaced it with Zambia Agency for Persons with Disabilities (ZAPD) which is more inclusive created under the Disability Act number 6 of 2012 .
The negative effective of misrepresentation of nothing about us, without us has affected effective participation of ordinary Zambians in the welfare of persons with disabilities because of self representation claim against full participation of disabled people.
During my research, I discovered that full participation has not worked well in Zambia because the formation of Zambia Agency for persons with Disabilities(ZAPD) came at the time when Zambia’s political dispensation changed from one Party to multi-party participatory democracy.
Government attention was on settling and meeting campaign promises to the Zambian voters and not to see that the newly created Disability Agency addresses the plight of persons with Disabilities in Zambia.
The elite disabled people at the time took advantage and used the slogan nothing about us, without us to mean that the agency and other Government created institutions to implement disability related programmes are properties of the disabled and should be managed by them.
Until this approach is changed for better, disabled people will continue to receive last service.
What effect has nothing about us, without us in Zambian context caused to these non-performing of institutions and no clear programmes to help the disabled people in general?
The Patriotic Front Government has started but they must take all disability programmes just like they have done to the National Aids Council (NAC). NAC is managed and run by professionals not people living with HIV/AIDS and not ‘chesu ichi syndrome”.
Chesu ichi
has resulted in other NGOs and civil societies in Zambia to take a back seat on disability issues hence we don’t hear them speak for and on behalf of persons with disabilities like they do for women, youths and children.
This must change for better and inclusive advocacy is required. It is my hope and prayer that you will take time to reflect on this slogan and how best we can use it to better the lives of persons with disabilities in a more inclusive approach.
There is need to bring more stakeholder on board to champion improved service delivery for persons with disabilities. Next week I will talk about what is expected from our next Republican President in terms of disability issues and job creation.
The author is Professor of Disability Studies at ICOF Colleges Seminary and University a Global Movement of Christian Universities, Disability policy Analyst for SADC and Inclusive Development Advisor for Africa, Centre for Disability Development Research Law and Policy.
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