When work and wages become impossible, support enables participation and hope
Abridged from http://danesfort.nu/bitterlemon/2014/04/dlafreedom
I have a number of hidden disabilities and for many years I was not overtly disabled. I have since been outed thanks to my need of physical support. It took me two years to get my award, but Disability Living Allowance has been a gateway to freedom for me.
With a recent flare up that started during Chemotherapy in 2011 I had lost all control and ended up having severe pain and pain-related depression. Add in the other mental health issues of PTSD, SAD and anxiety, and I had become a recluse. My confidence had been kicked in the teeth again and again. At one stage I hadn’t left the house in over nine months, not even to see a medical professional. I started to climb out of the deep pit and then I slid back again. I tried to hide my deterioration and, in a way, made life more difficult for myself.
The awarding of DLA has provided funds to us when I lost my wage so I could afford to put petrol in the car and make that trip to see specialist doctors. They always told me there was no cure. But I know that it is everything else associated with my condition that I am having trouble with, like control, the right to make decisions, to be able to do simple things, the impact on my independence, my ability to contribute to my family, my ability to work.
I had to come to terms that I could not earn a wage again. I had to come to terms that I would never be gainfully employed in the workplace. DLA gave me the hope that I could retrain. I am still trying to find a way to retrain so I can work from home in a new area that is flexible and adaptive to my physical issues and the ups and downs of managing a chronic long term illness. I know I will never work full time ever again but I can hope and dream of achieving part time work.
My various medical diagnoses do not really express to the rest of the world the impact that this chronic illness has on my identity, my freedom of choice or my freedom to be who I want. DLA has given me a financial buffer to pay for additional costs of transportation when I have attempted to attend university. It has helped in providing hope that I wouldn’t be trapped in the corner dribbling in pain, tanked on medication that makes my mind fuzzy but doesn't stop the pain.
DLA has helped pay for medication. It is going to help pay for dental health treatment after breaking my top molars again thanks to pain spasms. I have been saving up so I can see a dentist.
The DLA will be helping to pay for equipment like a new washing machine and dryer. It might even help me pay for a new pair of crutches that relieve pressure on my hands and thus give me longer standing time, maybe give me more time out of my home due to more mobility. But that is like saving up for a pair of Jimmy Choos for me.
But the main thing I am thankful is the DLA has given me the freedom to be a normal parent and participate in family activities for the first time in a long time. The last family day out before losing my income was the 17th January 2011. It was not a great day, thanks to me collapsing in the middle of a town centre market.
The next family outing was 28th September 2013. We went out in our vehicle paid for by Motability and the petrol paid for by my DLA. We talked, we joked, we looked at the interesting exhibits. We had lunch; we had coffee and cake; we communicated. Without the DLA we wouldn’t have had that experience, that break from the depressing fact of our physical and mental health issues.
DLA gives us the freedom to be normal individuals who participate in society. The moments are far and few but when they happen I am thankful for all we get.