Originally published here.

A woman with multiple sclerosis (MS) has told of how she will almost always get turned down for jobs if she discloses that she is disabled. "99 per cent of the time I won’t get an interview if I say I'm disabled," said Alice Donnell, "Then, if I don't disclose my disability, I will."

In just one example of many, the 30-year-old, from Hackney, cited an interviewer’s “ignorant, rude” - and incorrect - assumption that she would not be able to carry boxes, which led to her being rejected for a job at a bookshop. Experiences like this have led Alice into activism work, fighting for increased awareness about MS as well as more inclusivity and support. She said she took this case to The Advisory, Conciliation and Arbitration Service, primarily because she “wanted them to know that you can’t discriminate and not to do it in the future”.

More recently, the Londoner spoke to an audience of MPs and Peers at a virtual event organised by the MS Society, calling on them to do more to support people with MS at work. For people with MS, the rate of employment is 41 per cent, compared to 81 per cent for non-disabled people - and for people with the progressive form of the condition, the rate is even lower, at 17 per cent. Following a Parliamentary report on MS and employment, Alice shared her own struggles with MS in the workplace at the event.

The 30-year-old was diagnosed with relapsing MS aged 24. “My face had been feeling numb,” she explained, “then my right eye became slightly lower than my left, so I’d see double and feel like I was drunk all the time.” After Alice investigated these symptoms and received her diagnosis, she described feeling “weird and confused” about what this now meant for her.

“I felt like I should cry, but I couldn’t,” she said. “It wasn’t until later when I did some research that I realised it was serious. I initially thought I was going to be disabled within a year and not be able to walk or use my arms.” More than 130,000 people in the UK live with MS, which is a condition that damages nerves in your body and makes it harder to do everyday activities like walk, talk, eat and think. However, the Londoner began taking medication and has not had a relapse since. “I’m living relatively normally day-to-day,” she said, although going on to add: “I don’t like to think that MS rules my life, but it does dictate lots.”

After receiving her diagnosis, Alice left her job due to stress. Just over a year after quitting, she said: “It was bad. I couldn’t leave the house much unless I had an eye patch on, and then people would shout ‘pirate’ at me in the street. I didn’t like leaving the house after that - I lost my confidence. I was really depressed and completely lost myself. I was finally feeling the effects of my MS. I was really scared my eye would never go back and was worried I’d not be able to walk or move my arms. I felt useless and helpless. And there wasn’t much support. I didn’t know where to go or what to do.”

The Londoner said she began to feel, and so appear, better when she went for her disability benefits assessment. “They judge you from the moment you step into the waiting room,” she said. “I thought they’d understand MS, but that wasn’t the case - they didn’t have a clue what MS was. They weren’t listening. And it’s a really depressing interview to be a part of anyways, having to talk about all the things you can’t do.”

Alice was initially denied benefits and only granted them on appeal. She described the initial decision as “ridiculous”, saying: “It’s a condition you’re going to have for the rest of your life and I’d just come out of a relapse.”

As fatigue is a major symptom of the chronic disease, Alice worked part-time for the next few years, while also claiming disability benefits. When she felt well enough to work more she planned to increase her hours gradually, enabling her to get back into full-time work at her own pace.

But when she increased them by four hours a week, she said, her benefits were dramatically reduced to just £23 a month without warning. “I was really scared at the time,” she said, “My benefits had been taken down by a few hundred pounds, which had only been enough to sustain myself with rent and food anyway.” She said her overall income that month was less than her rent, which was “very stressful”, with stress being one of the risk factors for triggering an MS relapse.

Alice added: “My symptoms are invisible, so it can be hard for people to understand (and remember). For example, when I was working less, people in my office used to say I was ‘so lucky’ for being able to have days off to do nothing. They didn’t understand it wasn’t a holiday, it was time I needed to enable me to do my job.”

The Londoner was effectively forced to increase her hours more rapidly than first planned, which luckily her employer was able to do. Now, she has been working and not had to claim benefits for over a year. But, as well as the disability discrimination she faced when applying for jobs, she said many of her friends still end up with double the amount of money she does after she has paid for her healthcare costs and factored in the hours she has to take off for her health. “Many disabled people take a day off for their health but are punished for it financially,” she explained, adding: “People say they want diversity at work but they don’t.”

Even though the 30-year-old now feels well supported at work, she does think that there is a lack of awareness about MS in her workplace and that more inclusivity training should be provided. She is also urging the government to improve Statutory Sick Pay (SSP), so that people are not punished for being ill; ensure employers make reasonable adjustments to help people with MS stay in work, such as giving their employees the option to work flexibly from their first day at work; and improve Access to Work, a government scheme that helps disabled people enter and remain in work.

“I want justice for people who don’t have a voice,” Alice said, adding that she wants to speak out for other young people with the disease, which is stereotypically thought to often affect older people, to help them feel less alone. “It’s not scary to ask. Just communicate with people about what they need - which is usually just support. There are so many hoops for disabled people to jump through. People wouldn’t be disabled if the world was more accessible.”

You can read the complete article here.