Ableism towards invisibly disabled people is getting worse.
Using public toilets, taking a lift or sitting on public transport was never something I expected to terrify me. But it does.
As a young disabled woman with an invisible illness, I have experienced a lot of discrimination and abuse for using services I am entirely entitled to use.
I have cystic fibrosis – a life-shortening, chronic illness, that causes the passageways in my lungs and digestive system to become blocked with thick, sticky mucus, eventually leading to fatal lung damage.
But – despite my intense daily pain, four-hour medicine routine and more than 30 tablets a day – I do not ‘look ill’.
This has left me facing a lot of abuse over my life with strangers looking me up and down, laughing in my face and telling me that I must be lying as ‘I am too young’ to be disabled because, according to them, I appear healthy.
These ableist attitudes are most common when I am using public services. I have been told to give up my seat for elderly passengers on the train countless times. People mutter comments and shake their heads disapprovingly at me, and when I am most vulnerable – with my pancreas in agony and my lungs in pain – I am too overwhelmed to stand up for myself.
Now, after spending two years at home, shielding from Covid-19, the perceptions towards me have worsened. Covid places a considerable threat onto my already-damaged lungs, yet people tell me I will ‘die soon anyway’ or that I should stay at home forever so everyone else can get ‘back to normal.’
The prospect of entering public places again feels terrifying, and I am not alone in my fear.
There are 14.1 million disabled people in the UK and – according to research conducted by disability equality charity, Scope – 17% of disabled people say perceptions of disabled people have worsened during the pandemic.
This is particularly true for Daniel Reast, from Berkshire, who has hyperhidrosis, essential tremor and mental illnesses – including depression and anxiety.
Pre-pandemic, Daniel says he experienced verbal abuse because of his hidden disabilities.
‘The sweating and shaking I experience has always been pointed out by strangers who whisper to their friends or give me disgusted looks,’ he says. ‘But it’s also not completely obvious that I struggle.’
On the way to a meeting on the top floor of a building, Daniel was asked by security to leave the lift he was using because ‘it was only meant for people unable to walk upstairs.’
He explains: ‘If I had climbed the stairs, I would have been drowning in sweat and shaking like a leaf.’
But due to his extreme anxiety, Daniel is often unable to respond in the moment.
He adds: ‘The pandemic has highlighted how badly wider society treats disabled people. When lockdown ended, many people said that disabled people almost deserve to be locked indoors forever while the rest of society goes on.
‘It has highlighted just how ableist people can be.’
According to a study by Scope, two in five disabled people with an invisible condition reported facing negative attitudes from others while using public transport. While, one in three disabled people say that they face a lot of prejudice day-to-day.
Indigo Camryn, who has Ehlers-Danlos Syndrome, a connective tissue disorder, struggles with constant pain. She uses a mobility scooter as she is unable to walk very far but is often too anxious to use it, as it makes her feel ‘exposed and vulnerable.’
She says: ‘Everywhere I go, I’m judged in some way. I have to use accessible bathrooms when I’m out as I can’t hold my bladder for very long, and if the facilities are upstairs, I can’t go up without terrible pain or dislocating something.
‘More often than not, I’ll be confronted by some sour-faced random person asking why I’m using [disabled services] when I “should be using the regular toilets because I’m ‘clearly not disabled.”‘
Indigo often has to get taxis to go on very short journeys and said that even the drivers have told her she is ‘being lazy.’
‘I can’t believe it. I am paying for their services, and they still discriminate against me,’ she says.
In the future, Indigo hopes to educate the public ‘not just about invisible disability but also about how these confrontational and entitled behaviours make us feel.’
Sophie, who has cystic fibrosis, says she experienced ableism in her old job.
‘I wouldn’t get the same promotions as my peers, and I would be judged when I needed to go to hospital,’ she explains.
‘People would say, “remember, you have managerial duties to keep” or “maybe you can’t handle the job and need to be demoted to an easier job title.”‘
Sophie also agrees that the pandemic has worsened the discrimination she faces.
She says: ‘People have told me that I do not contribute to society like people without chronic illnesses. I’ve been told my CF makes me a liability.’
Alison Kerry, head of communications at disability equality charity Scope, says that discrimination intensified during the pandemic when some people with invisible impairments encountered abuse for not wearing a face mask – despite being exempt.
‘It is not right that disabled people are routinely experiencing discrimination and negative attitudes – whether they are shopping, getting the train, applying for jobs or simply being part of their community,’ she says.
‘Disabled people with invisible impairments often face invasive and insulting questioning by others about why they need support or certain reasonable adjustments such as needing a seat on the train or needing to use an accessible toilet.
‘It’s also important that people understand not all impairments are visible and that an individual’s condition can vary. Just because a person uses, for example, a wheelchair one day and not the next, it doesn’t mean they are faking their impairment.’
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