Living
Independently and being included in the community
In my first reading
of the Rights of Persons with Disabilities Bill 2012, I was very glad to
see it being included under the heading ‘Right to Live in the Community’ the
words used in this section are very similar to what the CRPD says making it
even better. Until yesterday when I was sitting and reading the Bill along with
colleagues when we together looked at it trying to understand it more deeply
and understand the changes it would bring to lives of disabled people.
The Bill recognizes the right of all persons with disabilities shall have
the right to live in the community and have choices equal to others. I am
assuming the choices means choices of places and living arrangements they can
live in, but from the Bill it is not clear so as a non legal person I am not
sure how the courts would interpret these choices as.
The bill puts
a duty on the State to ensure that persons with disabilities are not forced to
live in a particular arrangement; that the persons with disabilities must have
access to community support services; and community services and facilities must
be available to persons with disabilities. All these are very much needed and must be provided, but there are some
serious concerns looming in my mind that I would like to share. I am not a lawyer
and hence not sure if they are legitimate.
As I see the Article 19 of the CRPD in the Indian context there seems
to be a wide difference in what it means in urban and rural India. While in the
urban areas it may for some persons with disabilities mean living with their
family yet being able to exercise their autonomy while for some it may mean
living outside their family setup with the support they require. I the rural
setup where a lot of times there is a struggle to meet the bare minimum basic
requirement, where rights have little meaning, for a disabled person it can
often mean just being allowed to exist within their family setups. Considering 70%
Indian population is in rural areas, it will be a pity if this extremely
important section does not address their needs most explicitly and bring a
positive change in their lives.
Right to live
in the community and have choices equal to others
Having Access to an accessible home or shelter is one of the basic requirements
to fulfil Article 19. That is the only way to provide those ‘choices’ the Bill
promises in real terms. When I see this in the Indian context, I would not
hesitate to say that we are far from having ‘choices equal to others’ but that doesn’t mean that we would never
get their. Appropriate steps by the government in the right direction can
definitely get us their someday.
But today when I see the
situation the basic need of accessible shelter is often denied to persons with
disabilities. In Delhi I know of countless persons with disabilities who live
in homes that are inaccessible and are often unable to even step out of homes living
on upper floors without a lift. From my recent experience with home
modifications for persons with disabilities in rural areas, it came as a
surprise to me when parents and joint family members refused to allow
modifications to be made to their house so that the resident with disabilities
could have access just till the toilet and out of the house. They refused for
modifications even if they were not going to bare the cost of modifications.
Homes are not public buildings hence not covered by the Bill. It is
the parents or the family not agreeing to either shift to an accessible
accommodation or make modifications; so what is the recourse for the persons
with disabilities or for DPO’s can take to
enable these people with disabilities who are jailed in their own homes to
realise their human rights?
·
Should the State not protect
this basic right of the all persons with disabilities to have access to an
accessible shelter/home even if it means ensuring that parents/families provide
accessible living spaces?
·
Should the State not provide
support to such families that need to shift or make modifications?
·
Should not all new public
housing projects by default be universally designed?
·
Should not the right to rent
accommodation by a persons with disabilities be protected and should not the persons
with disabilities by allowed by the property owner to make reversible
adaptations on their own cost?
These are just some questions that are in my mind based on my
limited experience, I confess I have no idea of what Right to live in
the community and have choices equal to others even mean in the context of
persons with psychosocial disabilities and also Intellectual disabilities where
being institutionalized. I am more cautioned in light of the probability that
the Metal Health Care Act may be tabled for discussion in the winter session in
spite of all our collective advocacy against it.
Access to community support services
It is good to see that the State has recognized
the importance of community support services such as personal attendants to
enable persons with disabilities to live independently and participate in the
community. Again seeing it from an Indian context the way they are provided in
rural and urban areas may greatly differ and would require a lot of debate and
understanding of what are the community support services required for persons
with different disabilities and what may be the mechanism to provide it based
in the geographic and socio-economic backgrounds. Of course this can be
postponed till the Bill becomes and act.
My thoughts right now are around whether
ensuring access to community support services can be interpreted as State also
providing financial support to those who may be eligible to avail of this
community support and Subsidizing the cost of community support services?
Community services and facilities
The bill says “making community services and facilities
for the general population available on an equal basis to persons with
disabilities”
Again I am
very happy that the State has recognized the importance of this aspect in being
able to live independently but I am a little alerted by the use of the word
‘available’ and not ‘accessible’. In my opinion the two are very different and
can take it from a right based to a medical model.
I am also concerned
that there is a definition of services (which is very urban centric if I may
say so) but there is no definition provided of facilities.
Again my
concerns are around urban and rural differences and the need to ensure that
clean drinking water points, sanitation even if it is shared and village roads,
panchayat meeting places, local market, ration shop etc. must get adequate
attention and be included as part of community services and facilities.
Lastly in the
entire section in the bill why is the concept of ‘Living Independently’ been
completely eliminated? As a layperson I am unable to comprehend the
implications of it but as a disabled person I value the concept and would like
it to be provided in the Act.
