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Critique
of how the disabled have been sidelined in HIV prevention
Joshua Malinga
July 25, 2008
Although people
with disability constitute 10% of the world population, they remain
invisible and ignored. Disability is both a cause and effect of
poverty, and 80% of disabled people live below the poverty datum
line in developing countries (UN). Disabled people in all parts
of the world experience discrimination and are widely excluded from
the social, economic and political life of the community. The traditional
way of addressing disability issues has been either through medical
or charitable approaches, often based on the assumptions that disability
is an individual problem. Organizations for People living with disability
rather than organizations made up of disabled people themselves
have provided segregated services with little or no recognition
of disabled people-s rights to participate as equal citizens.
It is the way society is organized to exclude people with impairments
that is considered disabling not the individual impairments.
Governments
have rarely considered the needs of disabled people when formulating
their development co-operation agenda and have in most cases not
made sufficient efforts to consult representatives of the disability
community. Many donors, aid agencies, Non-governmental organizations
do not consider the particular needs of People living with disability
in their programmes or projects .Many do not have or practice policies
of disability, equality and thus exclude disabled persons from their
activities. As a result, development co-operation largely excludes
People living with disability.
The national
HIV and AIDS responses are not comprehensive, as some marginalized
groups of people are not adequately targeted. For instance, people
living with disabilities are not meaningfully involved in HIV and
AIDS programmes resulting in a major gap. The issue of HIV and AIDS
has not been adequately addressed among people living with disabilities
yet the disease is a deadly killer among disabled people. HIV and
AIDS is a significant and almost wholly unrecognized problem among
disabled populations worldwide. Being a person with a disability
living with HIV and AIDS is a double handicap that requires serious
attention. There is generally tremendous lack of information about
HIV and AIDS and terrible assumptions or falsehood that disabled
people are not necessarily sexually active compared to able-bodied
people. However, this notion is not only true but also malicious
as scores of disabled people are not only infected with but also
affected by HIV and AIDS.
Whilst the nation
has made great strides in targeting other marginalized groups of
people like orphaned and vulnerable children (OVC), women and people
living with HIV (PLHIV), the people living with disability have
not been comprehensively considered. A comprehensive HIV package
ought to be one that is target specific and all encompassing of
all groups of people. Some people may argue that specifically targeting
people living with disability is not a priority; experience has
however indicated that if people living with disabilities are not
targeted specifically they stand to lose out when grouped with able-bodied
people.
Another factor
that must be taken into consideration is the tendency of society
to view people with disabilities as a single group. Thus, people
in wheel chairs have become the popular representation of people
with disabilities. This ignores the diversity of disability and
the variety of needs experienced by people with different types
of disability.
People with
disabilities tend to be excluded from the mainstream of society
and experience difficulty in accessing fundamental rights. There
is furthermore, a strong relationship between disability and poverty.
Poverty makes people more vulnerable to disability and disability
reinforces and deepens poverty.
The spread of
HIV infection and sexual and reproductive ill health are driven
by many common root causes, including gender inequality, poverty
and the social marginalization of the most vulnerable populations
and groups. Strong linkages between HIV and Sexual and Reproductive
Health programmes and services, and special effort to ensure that
even disabled people can access health services; will result in
more relevant and cost-effective programmes with greater impact.
The protection,
promotion and respect of human rights of people in general and of
people living with disability in particular are essential prerequisites
to effective planning, programming and implementation of HIV prevention
activities. In other words, one of the principles of effective HIV
programmes is that the programmes must be comprehensive in scope
and must be at a coverage, scale and intensity that are enough to
make a critical difference.
HIV prevention
programmes should be planned with and not just for whom they are
meant. One famous quote by children advocating for meaningful involvement
of children in planning of programmes for them says, "Anything
for us without us is not for us!" This could be borrowed and
translated to mean that anything for the disabled without the disabled
is not for them. "The right to development requires us to
take on board the responsibility of ensuring that our organizations
are effective and efficient. The right to self-representation-the
right that only disabled people should speak for the disabled-implies
also the responsibility to advocate for democratic structures which
are representative and accountable"(The chairperson of Southern
Africa Federation of the Disabled (SAFOD) Senator Moses Masemene,
in the 2000 report:3).
Whilst the principle
of greater involvement of the PLHIV is formally recognized nationally,
regionally and globally, there is need to stimulate greater meaningful
involvement of people living with disability. HIV prevention strategies
have however failed to address the distinct prevention needs of
people living with disability and /or to build capacity of their
meaningful participation. The goal must be the right of people with
disability to play a full, participatory role in society.
Disabled people
are particularly affected by and are vulnerable to HIV and AIDS.
Many disabled people are also indirectly affected by HIV and AIDS.
They are often dependent on their families and due to HIV and AIDS
they risk losing the family who is assisting them. They have inadequate
access to information, health care and treatment. Information is
rarely available in appropriate formats for disabled persons or
adjusted to existing needs. As only very few of the world-s
disabled people obtain any form of education, illiteracy is also
widespread. There is a lack of information provided for deaf and
hearing-impaired people, in Braille for visually impaired people
and in any kind of accessible form for disabled people with learning
or intellectual disabilities.
The sexuality
of disabled persons in general and women with disabilities in particular,
is something unknown and often stigmatized and is therefore infrequently
discussed. Disabled persons are simply presumed not to have, sexual
contacts, which is yet another reason why information about HIV
and AIDS does not reach these groups.
How are people
living with disability marginalised?
- Limited access
to health services and facilities.
- Infrastructure
around most social and health services not user friendly for people
living with disability e.g. those on wheel chairs.
- Information
Education and Communication (IEC) materials not suitably developed
to suit different groups of persons living with disability e.g.
visually impaired.
- People living
with disability are in most cases not directly involved in programme
planning processes.
HIV
and AIDS and policy gaps
Whilst
it is plausible that the government has come up with a national
HIV and AIDS policy, it is however not clear how the impact of HIV
and AIDS on people living with disabilities is going to be addressed.
Baseline
survey
There is serious lack of reliable information on the nature and
prevalence of disability in Zimbabwe. Government has not made stern
efforts to collect data on disabled people. This has led naturally
to a failure to integrate disability into mainstream government
statistical processes. This lack of up to date baseline information
on people with disability has marred HIV intervention efforts as
programmes implemented are neither evidence-based nor informed by
any statistics on the ground.
Consultations
According to the National Response to HIV and AIDS, the government
has the mandate to facilitate and support the establishment and
operation of an appropriate HIV and AIDS coordination and advocacy
framework. This has since been done through the establishment of
National AIDS Council (NAC).The approach NAC took was a multi-sectoral
one reflected in the setting up of village, ward, district, provincial
and national structures/committees. However, the problem with the
establishment of these operational frameworks was the lack of wide
consultations with the processes inclusive of marginalized minority
groups of people like the disabled.
Language
and accessibility of policy and information on HIV and AIDS
The language used in the national policy documents is English. No
indications are given in the policy document that its dissemination
is to be in any other language but English. The need to make the
documents widely accessible to all people of different literacy
and ability and disability levels is not catered for .There could
have increased accessibility by producing documents in Braille and
through audio tapes. However, this was not so probably, because
the disabled persons were not consulted or involved in the production
of the materials. The marginalisation of disabled people cascades
to all other instruments or documents used by civic and non-governmental
organizations working with disabled people. There is need to develop
more Information Education and Communication (IEC) materials specific
for people living with disabilities.
Access
to treatment services e.g. ART
The issue of access to treatment whilst a national problem for all
people, it should be appreciated that the disabled people are worst
affected. It goes without say that if able-bodied people cannot
access anything the situation is worse with disabled people who
in most instances may remain unheard, unnoticed, ignored or sidelined.
There must be a deliberate effort to make treatment services such
as the PMTCT, VCT and ART accessible to minority-marginalized groups
of people such as the disabled.
Integration
and sustainability
Historically, disability issues have been addressed in a piecemeal,
fragmented way. This has been one of the key factors contributing
to the marginalization of disabled people and the dire poverty of
the circumstances in which the majority find themselves. If the
needs of disabled people are to be effectively met, disability must
be fully integrated into the principles, strategies and framework
of all the programmes.
Way
forward
- Governments
and organizations should uphold the disabled people-s principle
of self-representation and full integration and participation
in all programmes.
- Understand
the scale and impact of HIV on people with disability and address
it accordingly
- Ensure access
to resources by people with disability
- Assess to
what extent-funded projects are truly inclusive of disabled persons.
- More specific
programmes targeting people with disabilities should be designed
*Joshua
Malinga works with Pan African Federation of the Disabled (PAFOD)
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