What makes a person “count” as disabled? The Equality Act 2010’s definition is having a long-term mental or physical impairment that significantly affects your life. For most disabled people, the recognition of having a disability or chronic illness is important because it’s largely what allows us social recognition, medical support, and accommodations at work and at play.
For example, when I turn up at a train platform in my wheelchair, the conductor knows to grab the ramp, as a wheelchair is a very visible marker of disability. Other examples might be telling your boss about an invisible illness to get accommodations at work, providing medical evidence for mitigating circumstances for university, or wearing a sunflower lanyard so people give you a seat on the tube.
However, the main way many organisations identify someone as disabled is by whether they receive disability benefits such as PIP. For most disabled people the primary path to getting a Blue Badge for parking concessions is through government benefits such as PIP, DLA or Veteran’s Benefits, although a few other conditions provide a direct route, such as being registered blind. Non-disabled people often express shock that I, a wheelchair user, cannot currently use “wheelchair spaces”.
Another example is a Disabled Person’s Railcard. Apart from some specific conditions – like epilepsy, a visual impairment, or being D/deaf, the main way to get one is again via benefits such as PIP or DLA.
Even fun things like gigs often require you to “prove” your disability in order to be able to access a venue – I recently found a local venue that prominently advertised their “accessibility” on their website, but wouldn’t let me use the accessible entrance as I am still waiting to receive any disability benefits and no other form of “proof” was allowed.
This is despite the fact PIP’s criteria are completely irrelevant to whether you can safely attend a concert without accommodations.
Financial barriers are another problem, as many places that charge entrance fees charge carers at full price without proof of benefits, meaning that if you need a carer to come with you, you have to pay double what a non-disabled person would.
Theoretically, a benefit that can be claimed by anybody disabled, regardless of income, and that professes to include invisible illnesses, doesn’t sound like such a bad idea. However, as most people are aware, there’s a huge gap between what the DWP say and reality.
For one, they claim it should currently take six months to complete a PIP application, but anecdotally many claimants have had to wait over 18 months due to the appeals process. This means, when someone becomes disabled or begins their claim, it may be well over a year before they start receiving PIP, and therefore can “prove” they are disabled – if they are lucky.
The DWP’s optimistic estimates assume that the correct decision will be made at the initial application. Unfortunately, this is often not true, and many disabled people are dragged through the lengthy process of a mandatory reconsideration by the DWP, then being refused again and, eventually, having to attend a tribunal and request that a judge orders the DWP to pay up.
Less than half of initial applications are awarded PIP, but almost three quarters of the people who make it to a tribunal will go on to win. Sadly, a significant proportion of claimants give up due to repeated rejections and difficult, lengthy, and technical forms.
The rules for PIP require that you do not expect your health to improve significantly within a year – many chronically ill people face a wait of months or years before they understand their new illness well enough to know if this is the case, and even then often initially have to prioritise medical issues, employment and housing.
These factors combine to mean that many people in the first few years of illness are not recognised as disabled at all.
Many people who are disabled do not meet PIP’s criteria, but still need accommodations. If an applicant can regularly walk over 200 metres their mobility is not considered to be impaired, but standing for an hour at a gig, walking 15 minutes between classrooms or doing their weekly shop may still be impossible for them.
Gatekeeping accessibility can be social as well as institutional. For example, there is a culture of encouraging people to take photos of cars parked in disabled spaces without badges to “expose the lazy”.
This process of obsessing over a small minority of ‘fakes’ becomes a justification for the public scrutiny and suspicion of all disabled people, especially those with invisible illnesses.
As disabled people often post on my local social media pages, they sometimes forget their blue badge, are waiting for it to be renewed, or are currently applying – but more importantly, what does receiving a notoriously difficult-to-get benefit have to do with whether you need parking concessions? Again, it just excludes those who are already in difficult circumstances, or who have fallen through the cracks, rather than those who do not need help.
When disability is judged on benefits, someone who falls into this category does not receive any help at all, excluding large numbers of disabled people.
Having to constantly prove that you need help is in itself a barrier to access for disabled people, requiring lots of planning, extra money, and a variety of documents and cards often just so that you can get into a place the same as any non-disabled person.
It is especially harmful to disabled people when it relies on PIP and other benefits with punitive application criteria.
Gatekeeping like this supposedly prevents fraud, but in reality, leads to huge numbers of disabled people being excluded while keeping services nominally accessible.