‘You have to be prepared to discuss your bodily functions, mental health and your darkest days.’ (Photo: Jeff Spicer/Getty Images)

Living with a disability in the UK today means living in a state of perpetual fear, feeling unheard, patronised and at times like a burden – and it can take a huge toll on your mental health.

I was born with a genetic condition called Osteogenesis Impefecta (Brittle Bones) – a condition that won’t get better with age, and I am a full-time wheelchair user.

When I think about my own battles with anxiety and depression and what induces them, the principle triggers for my depression and anxiety come from the fear of losing my independence, not being able to work and financially support myself, socialise and feel part of a community.



Of course, I need to take ownership for my own wellbeing and there are measures I can take to limit my anxiety but I need to know that those around me understand and listen.


Especially as my independence still relies heavily on the external support I receive, namely financial support from the government.

The support the disabled community receives comes from the government via local authorities and it’s been this way since 1970s.

Initially it came in the form of Attendance Allowance and Mobility Allowance, intended to help people with mobility issues get around as public transport was completely inaccessible.

Then in 1992, Attendance and Mobility Allowance was integrated into the Disability Living Allowance (DLA) that had two additional lower rates of benefit, determined by your specific support needs.

My parents fought tooth and nail to ensure that I would receive support throughout my life and after a lengthy battle, I was awarded indefinite DLA.

However, in 2012 the government changed the goal post again and introduced Personal Independent Payments (PIP). This meant that anyone receiving DLA, even if they had been awarded it indefinitely, would now be re-assessed.

In a nut shell I, and thousands like me, now have to prove that I am disabled enough to receive further help.

The assessment involves a combination of telephone interviews, home visits, form filling and interviews at designated assessment centres, all of which are very intrusive and stressful.

Don’t insult us by sending someone with no knowledge of disability to asses us

For the form alone you are asked to go into huge amounts of detail about your impairments, illnesses or condition, and how they impact you.

You have to be prepared to discuss your bodily functions, mental health and your darkest days. Questions like: have you ever tried to kill yourself? If so, when? and, Do you have friends? are common.

You also need to put your pride and embarrassment to one side as the person coming to assess you often has no knowledge of your condition, or any formal qualification for medical issues.

You are given just four weeks to complete and return the form, which includes sourcing supporting evidence from medical specialists, doctors, physiotherapist , occupational therapists and supporting statements from any PAs (carers or support workers) that work for you.



Unsurprisingly, many have reported that the process has left them feeling dehumanised and vulnerable.

One full-time wheelchair user told me that at the time of her PIP assessment she was bed ridden due to an unstable hip. Yet the assessor asked her repeatedly to get out of bed and try to walk, stating, ‘If you fall I will catch you’.

She didn’t comply out of pain and fear of causing more damage – the final report stated that she ‘refused’ and therefore could not prove she was a wheelchair user.

Despite having been awarded indefinite DLA, she was not awarded PIP – and while she was eventually awarded the help she was entitled to, the experience left her feeling humiliated.

‘She didn’t understand my condition,’ she told me. ‘Even after explaining to her, [the assessor] asked me if I was sure that I do suffer that much?’

Others have told me that the whole process left them having panic attacks, night sweats and that they were made to feel like a criminal and a liar.

The whole process fueled their anxiety and depression, resulting in guilt and a feeling that they were at fault for their disability or illness, or that they were ‘making up’ their situation.

I recognise some people abuse the system and deprive those with genuine complex needs from receiving the help and support they need.

However, this new way of assessment is almost inhumane and an insult to anyone living the reality of life with a disability or illness.


Don’t insult us by sending someone with no knowledge of disability to asses us, don’t see us being able to walk 20 metres as a reason not to qualify for help.

Just because we are able to go out and work or socialise with friends doesn’t mean that tomorrow we won’t be in pain and unable to move.

Benefits are a necessity, not a luxury. Denying or reducing them not only leaves people in a vulnerable position, it sends the disabled community a message that says ‘we don’t care about you as a member of society.’

The government needs to take a long, hard look at its regime and realise the real impact that changing benefit goal posts has on a community that is already battling on a daily basis.

Until it acknowledges that this system isn’t fit for purpose, as well as the damage it causes disabled people including myself, we will be left with the looming PIP assessment hanging over our heads, having to cope with the feeling of dread every time we open our letter box.

MORE: We need a Minister for Disabled Children because the Government must support families like mine

MORE: Mother of disabled girl is asking shops to stop banning single use plastic straws

MORE: Paraplegic athlete forced to drag himself through Luton Airport drops case