Sarifa's reality
I’m disabled and a carer for my son and my husband who both have autism. I have fibromyalgia, osteoarthritis and rheumatoid arthritis, which means I’m in a lot of pain. I had a work accident in 1996, which contributed to my disabilities, and I suffer from PTSD due to experiencing hate crime.
My son has had disabilities since he was a baby. As he’s got older, his conditions have got worse – they are life-threatening. He has been in acute care twenty times and trauma care six times. He thought he was going to die each time and now has mental health issues. I have three other children, and the whole family has PTSD from this.
I have to provide lots of care for my son – even when my own complex health conditions are bad – because there is no support in place for his autism. One of the most difficult times was when his mobility car was taken away – leaving him without mobility aid.
As someone disabled, you get asked how can you be a carer if you’re disabled yourself? And you get asked why did you have a child if you’re disabled? But aren’t I human, don’t I have the right to have a child?
I’ve always worked, since I was 15. I receive PIP for myself and Disability Living Allowance (DLA) for my son. It’s so hard to keep applying for these payments. When you have to fill in the forms, it’s all about what you can’t do – all about your weaknesses. You have to go through it again and again. It makes you feel like you could have a relapse in your physical and mental health. It’s cruel.
In 2017, I was struggling to care for my son and husband, so I went to the GP for more support – but it was denied and at the same time, all of our support was stopped. Mine and my husband’s PIP payments were stopped, as well as my son’s DLA. I went to a charity for support and they helped me get it back.
Because of my experience, I advocate for other women who need support and many have language needs. Racism is definitely an issue. Some of the women I work with can’t speak English and can’t express themselves fully. They end up not getting enough points and have to appeal – and this can take months. People can die in this time. I’ve faced racism myself and serious hate crimes. One was so bad it forced me to abandon a court case for my son. I couldn’t face it.
The current social security system doesn’t work. I am very concerned about the proposal to stop 18- to 22-year-olds claiming DLA. This is a really hard age for people, they are transitioning into being adults. The risk of suicide at this age is very high and I’m concerned about them not getting the support they need.
I’m also worried about people who have hidden disabilities, especially mental health issues. Hidden disabilities are the hardest to prove. Everyone thinks my son is ok but he masks. They don’t see that he has meltdowns. He presents well in an interview and people this he is ok, but it took me a week just to prepare him for that meeting.
I’ve worked all my life and now I need support, but the system is failing me. When you’re a mother, you will crawl on your knees if you had to, to support your child. I won’t let my child die because we’re not being given the support we need. The system leaves you with no dignity, it makes you feel like you’re a scrounger when it’s your human right. When they ask you questions about going to the toilet – where’s the dignity in this?
The system doesn’t understand reality – or it doesn’t care. When you get a ‘0’ mark, it’s like they didn’t believe a word you said. How will it help your self-esteem or confidence if you’re accused of being a fraud. When you end up taking your case to a tribunal, the majority of times you will win – because they were wrong.
The system needs to change. It needs to be made in conversation with disabled people. Service users should be on any decision-making panel. We understand the emotional, psychological and physical impacts for people. They should live our lives and see how we live. They should come and spend the day with me and see all the barriers and challenges I face in my life. The medical model of disability needs to be stopped – it is society’s problem, not the problem of those with disabilities.