Disability and us

Photo: Tina Kemp stands in a playground. Credit: Marcus Rose

UNISON member Jeanette Lloyd was 53 when she woke up one morning and discovered she could no longer see.

“It was a really sunny morning and I opened my eyes and thought, ‘Oh it’s a bit blurry in here’. I thought it was because of the sunlight,” she recalls.

Jeanette got up for work as usual and went to her job at Derbyshire County Council. When she got to her desk and turned her computer on, she realised that she couldn’t make out anything on the screen. The entire screen was blurry, and she had to enlarge everything to be able to read it.

Her eldest daughter, who worked for an optician, encouraged her to go and get checked out. The optician told her to go straight to hospital. He suspected that the retina in her left eye – the light-sensitive tissue at the back of the eye that transmits signals to the brain via the optic nerve – had become detached.

Jeanette was diagnosed with a condition called non-arteritic anterior ischemic optic neuropathy (NAION) in her left eye. It’s what happens when the oxygen supply to the optic nerve becomes blocked and the eye has a form of stroke. For Jeanette, who had already lost the sight in her right eye when she was a child, this meant that her only working eye was no longer functioning.

“When I was four years old, somebody threw a stone and it blinded me in my right eye. I never had any sight in that eye moving forward. However, not knowing any different, it just means I grew up accepting it was normal. I didn’t wear glasses, I didn’t have any adaptations, I took my driving test as normal.” Jeanette had driven for 37 years.

“Never once in my life did I ever think, ‘What if something happens to the other eye?’”

‘It was all just taken from me’

Jeanette Lloyd. Picture credit: Mark Pinder

Jeanette was told her condition was untreatable. She was registered as blind and told she would no longer be able to drive. Immediately, Jeanette was hit by a tidal wave of grief.

“There were three things that upset me: the realisation that I was never going to drive again hit me really hard. And at the time my eldest daughter had just had twin boys, who were only a year old, and I realised I wouldn’t see them growing up. I was also worried that my youngest daughter, who was 15, would have to grow up really quickly and look after me.”

She adds: “It was all just taken from me, and I felt bitter about it, if I’m honest.”

This is something that Jeanette wishes people understood in conversations about disability: that any one of us can become disabled at any time.

“I’ve always lived with being partially sighted, but it was never disabling. But then this changed my world. I didn’t realise that when I parked my car on that last night, it was going to be for the last time.”

The powerlessness that Jeanette felt was overwhelming. “I’ve always been a very independent, strong person and suddenly, I had no control.

But what I did have control over is how I dealt with it. I knew I could either sit and wallow and feel sorry for myself, or I could go, ‘Okay, well you know what? This is another challenge, so let’s bring it on.’”

‘We’ve all got to be prepared to learn’

Six years on from her diagnosis, Jeanette is a member of the union’s disabled members committee. This year, for the first time, she chaired a session at UNISON’s disabled members’ conference. In her sixteen years as a union activist, including her role as branch secretary of the Derbyshire branch, she says this was her highlight.

“That couple of hours I had on that platform in front of all those like-minded people was just fantastic.” The culture among disabled members of the union, Jeanette says, is supportive. “The national disabled members’ committee is probably one of the nicest committees I’ve ever been on. We have got a wide variation of issues between us and it’s very difficult to try and meet everybody’s needs, but we all have a massive understanding of each other,” she says.

There are hundreds of different forms of disability, and everyone manages differently. Some people are born disabled and some people become disabled later in life. As Jeanette has discovered, this brings a whole different set of challenges. When she registered herself as blind, she began to receive things in the post in braille, which she had no idea how to read.

“There’s no way on earth I’m going to start reading braille at 53 years old,” she says. “There’s no recognition for people who can’t use sign language because their deafness may have come on suddenly overnight.”

Jeanette is supported through flexible working, which allows her to work from home, and with tech support. She has software on her computer that enables her to enlarge fonts on her screen or can choose for it to be read back to her through a screen reader.

She has also realised that there’s a difference between being disabled and identifying as disabled. “There are many people out there who would completely be protected by the Equality Act, but they don’t identify as being disabled, it doesn’t even occur to them. I’m fairly confident that UNISON has a far greater number of disabled people than the statistics show.”

For this reason, Jeanette wishes there were greater curiosity about disabilities, and a culture of learning about how disability affects different people. Even as a disabled activist, she says she is always learning.  “You can’t just become disabled and then be expected to be a font of all knowledge for every single disability that’s out there. We’ve all got to be prepared to learn.”

Jeanette encourages all disabled members to get involved within the union. “First of all, speak to the branch to see whether or not there’s a branch disabled members’ officer. If they don’t, they definitely will have one in the region, so the branch can signpost you.”

Sign language benefits everyone

Tina Kemp, talking in BSL with Debbie her interpreter. Credit: Marcus Rose

Tina Kemp, who also sits on UNISON’s disabled members committee, has been deaf her entire life. For decades, she has worked in education supporting children to learn British Sign Language (BSL), which is her native language. Now, she works as the BSL manager at the Ivy Learning Trust, overseeing a team of BSL teachers across 17 schools in Enfield and Hertfordshire.

“All of the children have access to BSL, and we’ve found that it’s really beneficial for all of the students, not just deaf students. It really helps the visual learners.”

This is a very different schooling environment to the one that Tina experienced growing up. “Sign language wasn’t permitted when I was at school, we used to get slapped and be forced to sit on our hands,” she recalls. “I had to lip read.

“But now, children get the option whether they want to talk or want to sign. They can choose. There’s better deaf awareness and there’s now more technology out there, with mobile phones and laptops with video calling.”

Tina’s journey as a union activist began in the union’s Enfield branch, which she is now chair of. Her specific work within disability began five years ago when she joined UNISON’s deaf caucus. “All of us are from different backgrounds, we’re all in different jobs and spread all over the country, but we all have the same barriers. We experience the same things. So it’s nice to be able to get together and support each other,” she says.

The most common barrier that deaf people face at work is a lack of deaf awareness among colleagues. “Colleagues think that deaf people are rude, that we are ignoring people when we’re not,” Tina says. “We just don’t hear them, and if they’re talking to us behind our back, we don’t know. Some people shout, but they don’t need to shout, they just need to talk normally so we can lip-read better.”

It’s also important for deaf people to have a well-lit working environment.  “We hear through our eyes, so it’s important our eyes aren’t straining to see the whole time,” Tina says.

“If colleagues are trained and receive deaf awareness training, it makes work life so much easier for everybody.”

Tina is raising deaf awareness in her branch union meetings, which she chairs. “You have to look at me when you’re speaking, and only one person speaks at a time. If it’s a virtual meeting, people must have lights on where they’re sitting so I can see their faces on the screen clearly. Making sure we have those ground rules in all our meetings helps everybody, not just deaf people.”

The ultimate deaf awareness, for Tina, would be the mainstreaming of sign language. “My ideal world would be one where everybody could sign. It’s such a visual language and it helps hearing people too, so it would be great if everyone could use it.”

Tina also chaired a session at this year’s disabled members’ conference. “When I sat there in the chair, I looked out and thought, ‘That’s a lot of people’. But it was such a great experience. I had one interpreter onstage with me, and two interpreters were sitting in the front row of the audience so I could see those, as I couldn’t see the interpreters that were on the platform.”

However, while Tina feels valued by UNISON’s membership, she can’t say the same about the government. Like millions of other disabled workers, Tina relies on support from Access to Work, a government grant that helps disabled people meet their workplace support needs.

For 23 years, Tina has used Access to Work to pay for interpreters. However, this year was the first year that she was not granted the money she needed.

“It’s the first time ever that my Access to Work award has been slashed,” she says. Tina is not alone. She manages a team of nine, five of whom are deaf. All of the deaf workers that she manages have had to reapply for their Access to Work payments. There is no appeals process for these decisions, but people can apply for their award to be reconsidered by a different case manager. This can take months. The average wait for an initial Access to Work application is already 100 days.

In Tina’s experience, it’s not uncommon for Access to Work case workers to lack basic deaf awareness. “They ask really ignorant questions, like ‘How did you become deaf?’ I didn’t become deaf, I was born deaf.”

Tina no longer has the budget to pay for interpreters for all of her working hours. In a political environment that has seen the government seek to cut spending on disability benefits, thousands of disabled workers are not being granted the money that they need.

Discrimination

The current political debates on disability benefits, as well as the barriers to the Access to Work system, have sent a clear message to Tina and disabled workers. “I think the government’s view of us is that we are too expensive,” she says. “I feel like they’re trying to push us out of work. On the news, the government say we want people to continue to work, but how is that possible if you’ve not got the right support in place? That’s discrimination.

“The reality is nobody’s getting any younger,” she continues. “Society’s getting older and more people have disabilities. As people get older, strokes become more common, and people lose their hearing. Eyes don’t work as well as they did. And accidents happen where people become disabled. But people who are non-disabled think, ‘Well, there’s nothing wrong with me’ and don’t understand how disability could impact them later on.”

Disability History Month runs from 20 November to 20 December: https://ukdhm.org/