Society and politicians need to wake-up to the fact that disability is a normal part of the human condition that can impact us all, says Penny Pepper

I wonder sometimes whether the day come when I will forget I live in a disabling society? It is unlikely.

Personal experience and the endless statistics tell me otherwise, including how hate crime towards disabled people has escalated under the Conservatives. Outright bigotry is easy to notice, sometimes it wears the smiling face of religion and charity.

Our hidden history is another factor – one of abuse, eugenics and murder. Aktion T4 was the enforced euthanasia of disabled people – ‘useless eaters’ – by the Nazis. The Winterbourne View scandal saw disabled residents pinned down, slapped and taunted. Jimmy Savile preyed on the vulnerable and disabled – I met him as a child in hospital and managed to flee.

These realities must not be dismissed as disabled people expressing ingratitude or asking for ‘too much’. Equality is not a privilege. 

Disabled activists and academics fight on to connect the understanding of disability to the root causes of all discrimination. You can provide a wheelchair user ramped access into a venue, but that doesn’t stop that person from being considered second-class, annoying, needy, repulsive – and too costly. Pointless, in fact.

The repellent fall-out from such horrific histories continues to haunt disabled people. Abuse remains chronic and largely unreported because it is not taken as seriously as it is with other marginalised minority groups.

The Coronavirus pandemic has been a case in point of when I have personally noticed discrimination and bigotry. For instance, a personal assistant of mine recently arrived for work and then tested positive – but I’m confronted with staffing emergencies that often lead me to make decisions to employ unvaccinated workers. I’ve written before about the care industry catastrophe; there are simply not enough people wanting to do the job.

For 26 years, I’ve run my own ‘care scheme’ within the embrace of the independent living movement using direct payments. I know my stuff. So, what do I do when the 15 in my emergency bank aren’t available? There is no social services safety net – the idea is laughable – and it’s plain we know more than they do about the reality of employing care workers. I scrape through – my Polish PA travelled over. Lessons are learned, but solutions stay challenging.

Equipped with my experienced PA, I set my work schedule. I do something I love, but it’s a road of multiple obstacles. Initially, it was general discrimination that cut across many of the tropes of marginalisation. You’re a (disabled) girl. You can’t be a writer or a wife. And you never went to university… On it goes. While angst-ridden teenagers may dream of being the next literary sensation, my added labels condemned me further.

The Government-run Access to Work scheme has been around since 1994 and, in principle, it’s a great idea. Through funds for equipment and/or support workers, it attempts to remove barriers and create equality in employment. But it persists as a truly Kafkaesque nightmare.

Much of the processing required remains paper-based – you have to print, sign and post a document in an actual envelope. At a time when online services remove so many barriers – and most other Government departments are digital by default – no one seems to know why this scheme is lagging behind.

As a speaker and spoken-word poet, I travel the country – and barriers begin the moment I leave home. 

It starts with broken pavements and the mysterious phenomena of non-paired dropped kerbs. I speed down the kerb – with its tactile paving for visually-impaired people – and then I’m stuck in the road. Not such a big deal at home in Hastings, but a nightmare in Westminster – a borough that wins the award for being one of the richest and the most scandalously lacking in access. 

The most recent time I had a meeting in Soho – a place I love with its roads of heavy history – I was late because of the lack of drop kerbs.

Complications then develop when I need the toilet. My usual approach is to use the nearest well-known coffee chain – mostly reliable for wheelchair access (though not in Soho).

Travelling can never be taken for granted. I work out where I’m legally allowed to park with my Blue Badge. They are not, like some people assume, an all-encompassing means of free parking anywhere. I seek out permitted spaces, but my success rate is as low as 30%. Why? Because every other disabled person is up against the same barrier of finding parking. And don’t get me started on the massive fraudulent use of the badges…

On a recent appointment in Whitehall, I decided that the bus would be safer – as disabled bays for cars are rarities in that area. But the bus is a chore too. The wheelchair space may be taken, the ramp broken, the driver unhelpful – and that’s before the loud abuse and the refusal of other passengers to clear the space. As for Black Cabs, I haven’t the energy to extrapolate all the barriers with that option; often too tired to fight yet again for what should be basic rights in many areas. 

If work means staying over, finding a suitable hotel is another ordeal. 

It begins with an online search, which finds 300 hotels in the area. If you add the filter for ‘wheelchair access’, this can reduce the available options to as low as six. This is before you talk to uninterested hotel staff and ask for specifics that will ensure you have equality of service as one of their customers. I pay the same rate, after all. Then there’ll always be the manager who’s utterly surprised when my PA doesn’t want to share a double-bed with me. This often forces disabled people to need a second room, resulting in double the costs.

While other disabled people will have many different stories to tell, education remains essential for society in general, and for our politicians in particular. The multiple barriers that endure are removable and not so difficult to moderate. Disability is part of the norm of human experience and, the more we all get used to this collectively, the better.

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