When I decided to have children the word benefits never entered my head! I was bought up with a great work ethic and enjoyed earning and spending my own money within my means.
After Morgan was born we spent the majority of his first year in and out of hospital, finally to receive his and Aidens’ diagnosis of the life limiting disease, Cystic Fibrosis at the age of one and five years old.
After coming to terms with this diagnosis, which will be another blog when I’m brave enough, reality set in about what this actually meant.
One certainty was that my career path was instantly shut off. Who would employ me knowing that at the drop of a hat I am likely to wind up in hospital for weeks on end?
The hospital, doctors surgery and chemist became my second home. They all knew me on first name terms and that tells you something. Even the most generous boss in the world will only take so much because at the end of the day they are paying you to do a job, so they need it done.
Suddenly we were thrown into the world of ‘benefits’ and on one hand I am truly grateful that they are there but on the other hand I live with guilt, frustration and fear of having them, which follows me everyday.
I am truly grateful because it has meant I can be by my children’s side through their difficult and unplanned journey and without them our lives would have been completely different.
Yet, I hold guilt from other people’s judgments that I am one of those ‘benefit people’, you know the ones, the ones that are ‘a drain on society and wasting tax payers money’. I think these judgments seem far more apparent for those who have invisible disabilities – my children don’t look sick! Look at the picture, can you tell which ones have disabilities?
I also live in fear! Fear that I am being watched, fear that I’m being judged and fear of anticipation!
Awaiting that dreaded brown envelope, the DLA/PIP renewal form, dropping through my letterbox is sheer hell. This is the 40 page document where I have to explain in great detail all the things my child can’t do, all the things that in life, I just used to take for granted.
I then live in fear that ‘they’ (the powers that be) won’t believe me, or that what I’ve explained is in fact, not disabling enough, or that what I have written and how that actually looks in reality are two different things which could somehow be seen as fraudulent.
They ask questions like ‘Do they need encouragement, prompting or physical help to take part in hobbies, social or religious activities? Or, do they need help when they are out and about? How many times a day you you need this help?’ And then expect the answer in minutes!
Disability is not measurable in minutes or with a simple yes or no or tick box answer how do you convey life into minutes?
And then there’s the biggest fear of all – after feeling guilty and fearful for receiving such a thing you begin to live your adapted life, you are then tasked with the thought that ‘they’ are going to take it away!
Cystic Fibrosis is a life limiting, degenerative disease, like many other diseases and conditions it is not suddenly going to disappear or get better so why do So many people have to live in fear or something that was put in place to support them? This is where the frustration lies.
No amount of money will take away the pain, heart ache and trauma that is felt every single day by families affected by illness and disability but receiving this benefit does enable lives to be lived in a way that is more manageable.
The money we receive allows our children to live a life they deserve – an equal life to those without a disability.
Research suggests that is costs three time more to raise a child with a disability that without.
Yet, society has created stigma around that the word ‘Benefits’ and that needs to change, as does the benefit system itself. It needs to stop this fear factor ruining peoples lives. The change in the benefit system is sadly out of our control.
We can however, remember and remind others that people do not choose disability and this will go a long way in helping to change the stigma attached to ‘benefits’.
I have attached three brilliant websites which have step by step guide lines to how you fill out that horrendous DLA form.
For those moving over to PIP at the age of 16, here are some step by step guidelines.