I am 58 and lost my sight in 1984, aged 31. with a rare hereditary eye condition. It is incurable, can not be reversed and there is no treatment. I am registered blind. I am lucky as, if I didn't have sight loss, I would be very well! I am told that often and I think Golly...aren't I the lucky one!!
Lucky, yes, as those who have this defect usually lose their sight in their teens. I had another 12 years to develop life skills and watch my children grow.
I have an RHS Diploma in horticulture and floristry. Something I achieved before sight loss. I still use that knowledge with a few adaptations but little other help. My DLA has meant I can continue to pursue a lifelong interest and help other disabled people less fortunate.
There was no help in those days only a white cane and a £10 Christmas bonus. I certainly knew nothing about DLA or its predecessor. 10 years later I heard about this allowance, applied and was turned down. Aren't we all? Appealed and awarded lowest rate mobility and middle rate care.
In April this year i will be eligibly to apply for the higher rate mobility. A 3 year, hard fought, campaign, by the NFB, turned the then Government into changing the criteria for qualifying. It recognised that although severely blind people had the ability to walk, we had no idea where we were or what the hazards were!
The care component has gone a little way to buying equipment which we all so desperately need. Adapting our house with strip lights, cupboards to store things so i don't trip over clutter. Contrasting work surfaces in the kitchen so I can find whatever I put on them! You'd be amazed how simple things transform a sightless world. In my case a talking computer!! Something that sighted people take for granted in their lives is literacy. Blind people can neither read nor write and as such are illiterate. 'Jane' has transformed my life and after 26 years I could communicate with family. friends and move into the 21st Century.
None of this would be possible without DLA.
What does concern me greatly is local authorities are now working to a National Eligibility Criteria when assessing people for a care service. In the past if the assessment showed you needed care and/or equipment and adaptations and met the Criteria you would be provided with the help required. Sadly for blind people this was never offered as local authorities did not feel only blind fitted the criteria.
Now, with these huge cuts to local authorities, only those people who meet the critical category will be offered a service. The rest have to pay for their own care any equipment they may need.
DLA will go a little way to meeting this appalling shortfall. Yet another service once provided by councils being denied to disabled people.
Of course they are allowed to help these vulnerable groups if they so wish. They wish not.
I am also a full time carer to my husband who suffered serious back injuries whilst serving in the Royal Navy. He was medically discharged with angolising spondylitis and cervical spondylosis. These are degenerating disabilities which severely restrict mobility. He suffers chronic pain which results in reactive depression. He is fortunate as he gets a War Pension and does not have to rely on DLA. I have to do so much for him even with my own disability and I never grunble!!!
For too many years I have been told 'You don't look blind'. This hurts dreadfully as people have a stereotype of a disabled person. Someone in a wheelchair or a long white cane, guide dog and be wobbly! Many disabilities are 'invisible' and as such the public judge you as a 'scrounger.' Neither David nor I 'chose' our disabilities and they don't come with a manual. We just try to meet the challenges they bring.
I am proud to have made something of my life as opposed to sitting down waiting for life to come to me. I am not a scrounger but do rely on extra money to achieve these things.
Help that changes the ability to have a quality of life. To be able to have some independence. Independence from well meaning people who have to read personal letters, hospital appointments and bank statements.
This allowance has the word 'Living' in it. That is what I want to do....LIVE.
Sent in via email
Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011
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