Wake up to our needs

For the past three years my health has been declining steadily,
making it difficult for me to function and to lead an active and
normal life. This move into a dependent disabled state is a
shocking thought. I am becoming increasingly concerned about the
services I am excluded from.

The government’s focus and agenda is on reducing the social
exclusion faced by marginalised communities, individuals and
groups. Yet, I am finding that the disability and social care
systems that are supposed to be providing me with support and
services are the ones that I am having to fight against.

I recall one battle to regain my entitlement to a blue disabled
parking badge, when I found to my cost that the government had
changed the entitlement criteria for qualification. While I
contested this I could not use many public and disability
facilities for six months. I had to go through the Christmas period
unable to use any of my local facilities or those in the adjoining
town. I had to write forcefully to my local authority challenging
its refusal to issue me a badge without any redress, visit or
assessment process.

My concern was that the criteria may have become more stringent,
but the forms I have been filling for the past six years have not
changed. No attempt was made to ask for more graphic detail to
judge this new criterion from me. Since going through this
stressful period, I have come across many people who have been
denied a badge without any redress. How many people who need these
vital facilities have been stopped by the lengthy and stressful
blocking method? It took more than six months for a social worker
in the local authority’s disability team to be allocated to my case
and assess my disability and needs.

The next battle I faced was just after I took a job as a mentor to
support, empower and encourage disabled people. I was referred to
the access-to-work service, which I believed would provide me with
support and access to help with my new employment. It has taken
this organisation more than seven months and a lot of stress to
meet my access needs. The battle still continues. Administration
and procedures I had put in place over the past six months have now
had to be retraced and adapted to the new methods being created to
meet my needs.

Another barrier I had to overcome was the unreliable cleaning
company I was assigned. Where is the community care and involvement
from services that are supposed to be there to encourage care,
involvement and inclusion? They need to make disabled people feel
“normal” and included within society. The barriers I am
encountering are the ones created by staff and services that feel
they know what people like me want and need. All those concerned
with making, shaping and creating the services that are appropriate
to our needs must wake up.

Carol Jenkin is a black disability and mental health
activist.