The stigma around accessible employment

Pippa_Alumni

My name is Pippa, and I’m a psychology graduate living with chronic illness. I blog about accessible theatre, lifestyle and fundraising at Life Of Pippa, and today I’d like to talk about what I wish others knew about accessible employment.

When I was at university, I thought that completing my studies alongside living with my chronic illness would be the most difficult part of my journey, and that after graduation things could only get easier. However, I quickly discovered that making employment opportunities work for me and my circumstances would be equally as challenging. 

I’ve lived with my condition since I was a teenager, and by the time I graduated, I knew exactly what kind of work I needed: opportunities suitable for my skills and interests, but with part-time hours and where I could mostly work from home. I’ve had a whole range of employment experiences, but thanks to my internship at Scope and recently pursuing opportunities in freelance writing, I feel so fortunate to have found things that can and do work for me and my health.

However, what I wasn’t prepared for was how my situation could be misunderstood by others. Comments such as ‘I wish I could work part-time!’ or ‘it must be so nice to work from home!’, are often made completely innocently, but just serve to demonstrate how little these people know about myself and my condition. To an extent, I can understand how somebody could look at me and misinterpret my way of life as just an ‘easier route’. My illness is invisible, and my condition management mostly takes place at home: very few people see my struggle, and so I can see why they could wrongly think that I don’t work as hard as them.

What I’d like people to know is that these factors are a necessity, not a luxury. Being disabled is a full-time job in itself. My condition gives me chronic pain and fatigue, autonomic dysfunction, sensory overload and a whole other bunch of delightful symptoms on a daily basis. Even the smallest amount of over-exertion can make me really unwell: standing up for a few minutes, trying to write too much in one go, or sometimes even just somebody slamming a door too loudly can leave me suffering a great deal. Every part of my day has to be so carefully managed by ‘pacing’ just to make it through, and without these accessible opportunities, it’s clear that I wouldn’t be able to work at all.  

My part-time hours aren’t there because I spend my free time going shopping or seeing friends or doing the things that other people my age like to do: they’re there because when I’ve finished my work for the day, I need at least two hours in a dark, quiet room with no external stimuli just to make sure I can physically recover and do it all again tomorrow. I don’t work at home because I can’t be bothered to go into an office: I do it because every time I leave the house, the physical toll it takes means that the whole next day is insufferable. These things don’t mean that I work any less diligently than you do: in fact, I’d argue that my circumstances mean that I have to work twice as hard, just to achieve half as much as my non-disabled peers. 

If people think my reduced hours and home-based work are so brilliant, they’re welcome to them- as long as they take my chronic illness too.

Finding suitable employment when you have a disability is hard, and managing it on a day-to-day basis can be even harder. However, I really enjoy my field of work and the sense of purpose it gives me, and I know that I’m fortunate to even be able to work at all. There will be people reading this who will currently be searching for this kind of employment themselves- in the future, I hope with everything in me that there are more of these opportunities to go around. Employing disabled people isn’t an act of charity, and our reasonable adjustments are there for a reason- they’re not there because I have it easy, but because they at least help to put me on a level playing field. And for that, I’m grateful.  

Do you currently work part-time or have reasonable adjustments in place for your job? What would you like people to know? 

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lucindatoffee

Hi Pippa, thanks so much for your post. It really resonated with me and my experience. 

I too am a psychology graduate with an invisible illness struggling in the job market. 

I was able to manage my university work and condition as there was some flexibility and I was able to live at home. 

Like you, I thought I'd done the hard work and could now enter the job market in a part time role and could easily work from home as technology means that there is no longer a need to be stuck in an office. 

However, I found that I wasn't being offered interviews for part time roles and was informally told that employers didn't think a young graduate would really want a part time job so would not be committed to the role. 
I subsequently had to go for full time work and really struggle. It meant my condition got worse, I was constantly triggering sickness absence proceedings and generally felt awful about myself as I felt I was failing to do something that people take for granted. 

After countless jobs that I had to leave because I couldn't cope or was on the verge of getting fired due to my illness, I found myself applying for my current job which was advertised as home working. 
I was so excited to be offered an interview, but was then told the role wasn't home working, they just allowed home working 2 days a week. 
I got the job and truly love it, but still find myself struggling to cope. Ironically, I work for one of the leading health charities, but still feel enormous pressure to be 'normal' and 'fix' my condition. Subsequently, I am taking a cocktail of medication and paying for an array of complementary therapies just to show that I want to get better. 

I try and work from home as much as I can get away with as I am able to cope so much better and don't put myself (and others!) at risk by driving when I feel unwell or have taken strong painkillers. 
However, there is resentment from others that I get to work from home and my boss really pushes me to go to the office as she is worried what others might think. 

I completely agree that the biggest thing I wish people understood was that my need to work from home and ideally work part-time is not because I'm lay or self entitled, but because I need to for my health and to stand any chance of being able to work at all. 

Pippa_Alumni

Hi @Victoriad, thanks so much for your kind words!

Hi @lucindatoffee, and welcome to the community! Thanks for sharing your experience- it sounds like things have been really difficult for you and I can completely empathise with some of the things you've been through. I'm sorry you're having to go to such lengths just to prove that you're capable and willing to work. Just in case you're interested and do want to try and take things further with your employer, Scope have some guidance on work and reasonable adjustments, and also employment advisors who may be able to provide assistance. Keep in touch and if there's anything we can assist you with, do let us know!

CariCariad

Hi Pippa,

You have verbalised the difficulties with those with an invisible disability so well. My disability is different to that of yours, yet I resonate with your experience.

I believe that our differences and the human tendency to compare and judge each other, no matter the ability, is what separates us and causes the difficulty for those with a disability. I consider this and the current lack of accessible employment to be systemic discrimination. Our government is unconscious of their own bias against those with disabilities, thinking that giving benefits or adaptions means that those with disabled can compete with those without any challenges. This is not true.

I have lived in a different country where the same issues were there, however the difficulty of accessibility to employment was judged and accounted for on an individual basis, making it much easier to work in a way that suited my needs. We do not have this in Britain. It is one size fits all and often it does not as the base line is judged in an abled society.

I feel passionate that we need to change the system so that we are valued as members of society, rather than, as we are often seen , as scroungers and undeserving. I want to join those who also share this passion and do something!

So well done Pippa. Carry on with the good work. I will support you all the way!

jjaanniiccee

Hi all, 1st time I've been on here ! I have been wondering about employment in the future I have a few issues I have hydrocephalus and had a shunt fitted after a failed etv I have a memory and concentration impairment possible fibromyalgia and all that goes with it also I have bowel incontinence on a regular basis and wondered if any one with similar who successfully entered work

Pippa_Alumni

Hi @CariCariad, thank you so much for your kind words. I'm so sorry that you can relate to my experience: it sounds like you're well on your way to making a difference though! I hope today is as kind as possible to you, and thanks so much again for your kindness. 

Hi @jjaanniiccee, and welcome to the community! Great to have you here. You may like to have a chat with our employment advisors to see if they can offer any guidance, and you may also like to connect with others in our employment category. Do let me know if you'd like any assistance with this!

jjaanniiccee

Thank you for your reply I will take your advice ☺

deb74

hi pippa. just read your post. my disabilities are not visible and i find people don't understand the challenges we face. i have been off work for the last 12 months after a shoulder operation which is nothing to do with my disability. but peoplke have said to me it must be great not to have to work. someone even said to me the other week that they wish they were on the sick. but i have found working very hard i have walked out of lots of jobs. because i have hydochephalus and my co-ordination is not very good. the last job i had was in a factory and i was constantly bullied because i waas slow but i physically couldn't keep up with them. my memory is also very bad which really frustrates me and probably makes me look really thick. i find that if tell people about my condition they don't understand and still carry on thinking i am thick. hopefully i will find a suitable job soon as my job coach at the jobcentre has referred me to remploy. sorry for and spelling mistakes i am dylexic

Pippa_Alumni

Thanks for sharing this, @deb74. I'm so sorry to hear about your experiences- it's one thing having your situation being misunderstood by people, but being bullied because of your disability isn't at all acceptable. Wishing you all the best for your job-hunting, really hope you find something that's right for you! 

deb74

hi pippascope i am getting a lot of help and support from scope and hopefully i will get plenty of help from remploy as well. so hopefully i will have the right job soon

jjaanniiccee

Hi deb74 I am in exactly the same position as yourself perhaps you would like to keep in touch I too get very frustrated that people treat us as thick for want of a better word personally I could not go back to the job I had as I was a carer in the community which was very physical and demanding I have no idea how I managed all that time nearly 23 years of experience so I've no idea what to do now

deb74

hi jjaanniiccee. i am really worried when i start a new job that my disability will get in the way. as you know there is nothing you can do about how it affects you. the the problem with hydrochephalus is it is not immediatley obvious to people which makes people think you are completely thick and if you try to explain it to them they don't understand. The thing with me is i am very stubborn. it probably comes from years of being bullied. if i want to do something i will try to do it even if i struggle. one example is i went to university and because my brain is not wired properly i seriously struggled to the point where i was on the verge of a breakdown before i decided to admit defeat!

Pippa_Alumni

Hi @deb74 and @jjaanniiccee, thanks for sharing and so sorry to hear about your experiences. On the one hand it's good to know you're not alone, but I do feel for other people in the same boat!

If you're looking to get back into employment in the future, you might want to consider Scope's Support to Work programme for assistance with this. We also have employment advisors who are happy to answer any questions you may have. Hope today is being as kind as possible to you both! 

deb74

thanks Pippa. i am already being helped by Donisha and i have got a meeting with remploy next week.

Colourfull

Hi Pippa,

Very well done to you with the Conditions you have you are Amazing it is really hard with invisible illness I have 5 grown up children and be ive me it was a massive challenge after my op in about 2 weeks I will be looking to complete my computer course and then would love to do a part ime job using computers of all things.
My back is playing up n my hips @t the moment the things I find hard is I am a perfectionist find it very hard to leave things when not feel well at all.

Colourfull.