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Photo: Pauline Wanjiru Njiru

Photo: Pauline Wanjiru Njiru

By Bonginkosi Moyo-Mbano*

“Disability does not mean inability! Human rights for all! Equality and access to good health care! Leave no one behind!” These are among the many slogans that were thrown around at the recent 18th International Conference on AIDS and STIs in Africa (ICASA) held 29 November - 4 December in Harare, Zimbabwe. Some participants felt that the conference venue sadly belied these clarion calls as it was ill-equipped to handle the mobility and access needs of persons with disabilities.

Mary Ann Uchenna-Okeke, a 35-year-old Catholic and Nigerian national living with disability, attended the conference as part of the World Council of Churches Ecumenical HIV and AIDS Initiatives (WCC-EHAIA) and Advocacy delegation and daily had to painstakingly negotiate the stairways in order to enjoy her rights as a full participant to the conference.

"The welcome has been warm and our issues are well-represented in the programme but I have had to climb up and down the stairs several times every day to fully participate in the workshops," a resigned Uchenna-Okeke said.

Uchenna-Okeke’s story began like any mundane childhood story until the age of seven where a mistaken malaria diagnosis turned out to be polio that left her paralysed in both legs. Three operations later, she was able to be fitted with callipers and could move with the aid of crutches. She missed six years of school and, at age 13, went back to third grade. However, three years of school were all she got before her father died and there were no resources to keep her in school. At 16, she became a vegetable vendor to feed herself — a business she has grown and expanded to also include grocery items such as rice and oil.

At 33, she was once again diagnosed with malaria that 'could not' be cured and was eventually re-diagnosed with hepatitis A.  A third visit to a different hospital run by Catholic nuns who had helped her previously revealed that she was HIV positive.

"I cried when I found out I was HIV positive because up to this point I knew very little about HIV except that it was a death sentence...I blamed myself and often bewailed my fate, asking God: why me? I fell into a state of severe depression and suffered from dramatic weight loss. How could I, a person already struggling to survive, cope with the additional challenge of HIV?

"Two years on, I have almost come to terms with my status. Participation in WCC EHAIA-led training workshops in Nigeria has given me more knowledge and the confidence to have the hope that I can survive. I am no longer afraid."

Uchenna Okeke has yet to disclose her HIV status to any member of her family. She fears discrimination, stigma and alienation.

"Living with a disability and with HIV within contexts that do not cater for the special needs of such people makes their lives nearly impossible. Institutional discrimination as found at venues that do not spare a thought for those who are differently abled entrenches their self-stigma and psychological distress," said Rev. Dr. Nyambura Njoroge, WCC-EHAIA programme executive.

"Recognizing everyone's right to dignity cannot be in word only. Reaching the UNAIDS 90-90-90 goal will remain an illusion if serious attention is not given to the needs of key populations such as people living with disability. No one should be left behind.”

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*Bonginkosi Moyo-Mbano is communications director for the Methodist Church of Southern Africa.