To want to understand how disabled MNers manage to be employed?

[JobhuntingDespair]

With the proposed benefit cuts, I'm interested in the reasons why those who could work struggle to find suitable employment, so would like to know how people have managed it. (I'm currently job hunting myself, having to take into account autism and keeping mental health reasonable, so I am facing some of these issues.)

So if you're unwell/disabled and in employment (or know someone who this applies to) I have some questions...

1. What sort of role are you in, and is this influenced by disability? (Eg. physical disability so avoid manual work.)

2. What sort of reasonable adjustments do you find the most helpful? And how easy was it to get these?

3. Were you disabled when you became employed, or later so had already proved your worth to employer?

4. If you were already disabled, what led up to your current role - eg. did you have to get qualifications? Experience elsewhere? And how did you financially support yourself during this time?

5. How did you manage to pass the probationary period or avoid being managed out for performance/time off sick?

6. Do you have large CV gaps due to your disability, and if so how have you explained/managed these?

7. How did you convince an employer to give you a chance, to get a foot in the door of a suitable job?
   (I'm thinking in particular of experience (and references). Starting in any old job as a first step toward something better may not be possible for a disabled person as the "any old jobs" available are unsuitable due to their disability. Is there a way to leap-frog past this stage?)

Anything else you think is relevant please explain!

I work in HR in local government and wanted to add something similar. If adjustments are reasonable and absence isn't extremely high then I think we do pretty well in supporting disabled employees.

I will admit, in this anonymous forum, I really struggle with ADHD cases. Individuals seem unable to identify what may help them manage at work and struggle to commit to things like completing access to work referrals. ADHD is the only condition I have come across so far where the individuals attitude is 'well I'm disabled so you have to help me, but I don't know how you can help me'. It's grating tbh but I don't know if this attitude is a symptom of the neurodivergence

I’m a wheelchair user with EDS currently doing my teacher training. I have spent the years before this as a private tutor through an agency. I’m part time, I don’t think I could do full time, I just don’t have the energy of an able bodied person, I’m exhausted and often in agony by bedtime. I do love the work though. Technically I’m not “employed” but one of the schools I’ve been training in has basically said they’d like me to work there once I’m qualified. I’m confident I’ll find work when I’m done. Maths teachers are in high demand right now. I have very strong academic qualifications and, while I’ve not got everything mastered yet, the feedback I’m getting is promising. I’m lucky in that I was born good at maths, with supportive parents who could support me through uni.

I’m responding to your overall queries as due to current exhaustion I couldn’t manage so many questions - agree with a previous poster I also thought some of them were quite judgemental and completely misunderstand the breadth of long term ill health and disability
I had never had any health issues until I was expecting DC2 30+ years ago - then my world completely changed
Started voluntary work and doing free training courses 5-6 years later when some treatments had helped
I then ending up doing a few hours work (as much as I could manage) for the same charity under the then permitted work rules
Over the years I worked my way up - still same employer after 26 years
I am classed as full time - but as ‘the boss’ do whatever I need to do some weeks can be 50 hours plus - others not as many
Main things that help are I can choose my own working times and within reason the location
Over the years my health conditions have changed and got worse - not helped by getting older - at the moment due to a newly diagnosed condition affecting existing ones negatively - I have endless medical appointments - feels like almost daily 3 this week so far, 4 last week, my employers have no issue with this as I am ultimately autonomous and can be flexible
If I ever have to give up this job or reduce hours, I would probably have to take up self employed consultancy work as I doubt many people would consider me - not helped by age and I cannot see retirement ever being an option due to finances

I’m disabled but I became disabled after I’d worked at my company for a long time. They are good to me. They give me, and all staff, paid time off for all doctor and hospital appointments, but that’s normal for everyone. I get more breaks and time off for other appointments. And I was allowed to buy two weeks of extra leave. Quite a lot of my colleagues are disabled, though, as the work involves services for disabled people.

Forgot to add - I have had a lot of support over the years from access to work - from adaptive furniture - to technology and specialist auditory equipment
Recently been re-assessed to update some things from last grant 6+ years ago and to reflect my worsening health and recent diagnosis
Current news that this scheme may be tailed back is very disappointing when the rhetoric is they want more of us to work
Ive worked since I was 16 and have already paid my max years NI for that minuscule state pension I will get at 67

Osteoarthritis in the hip,high pain levels manageable by lots of pain management.
Been a cleaner for 40 years, literacy issues,no digital skills.someone else wrote this for me
My ADP money gives me the ability to get to work for a 6am start no public transport at that time and I couldn't walk the two miles to work like I used to
16 hours is the most I can physically manage in a week.

I have asd and mobility/chronic pain. I work 12 hours a week , some weeks it’s fine others it’s a struggle

Yeah I'm getting bad intentions from this one.

I knew someone who had problems walking who worked as a receptionist.

And??

Yeah I've got no legs so I just do jobs where I can use my arms.

I am registered disabled with inflammatory arthritis. I have a job in medical research management and much of it is office based and I can WFH so at the moment I can work full time but fatigue is a big issue at the moment and think this will end in me going part time

Why?

I'll be honest, I'm actually finding it pretty upsetting that a few posters are saying these things but not explaining why. But then, I'm autistic so I have trouble trying to guess what people are thinking with absolutely no context. It's upsetting to have people annoyed with me and no idea why.

All the things I have asked in my OP are the sorts of things ill/disabled people have said about why it's difficult to find or sustain suitable employment. And this is over years and years - I've been thinking about this stuff since the Tories changed disability benefits back in 2010, which was terrifying for so many people. And before that in a personal way, trying and failing to hold down jobs and often reduced to living on what was Income Support at a rate the same as under-25 basic jobseeking benefit, in insecure housing (shared HMOs) and homeless more than once (I didn't know I may have been entitled to more help. But I experienced the sort of finances and life that now threatens many, and I am scared for them even if I will probably be ok now). I ended up so broken by my mid 20s that I couldn't work for a decade.

There are now changes afoot with the idea that ill/disabled people currently on benefits should go to work, with little consideration of the barriers to this. So I am trying to find out, get a picture of, how those who are in work have managed that.

I have autism, depression and anorexia and here’s my answers to your questions:

1. What sort of role are you in, and is this influenced by disability? (Eg. physical disability so avoid manual work.) Public sector, people centred role. I find a lot of neurodiverse people are attracted to this kind of work for some reason.
2. What sort of reasonable adjustments do you find the most helpful? And how easy was it to get these? I don’t have any but I’m able to make my own. My hyperfocus allows me to work on reports quickly and then I can finish early if I’m working from home which o can do 2/3 days a week. If I’m working from home I can use the time I’d spend commuting to do a workout which sets me up for the day. I can take extra breaks if needed and I only eat protein shakes for lunch so I just eat while I work then take a walk.
3. Were you disabled when you became employed, or later so had already proved your worth to employer? Yes, I’ve been like this all my life.
4. If you were already disabled, what led up to your current role - eg. did you have to get qualifications? Experience elsewhere? And how did you financially support yourself during this time? I have a degree in an unrelated subject but am currently doing a related degree through work. I get one study day a week.
5. How did you manage to pass the probationary period or avoid being managed out for performance/time off sick? I’ve never had any issues with my performance and I’ve only had one day off sick in 2 years. I space my annual leave so that I don’t burn out.
6. Do you have large CV gaps due to your disability, and if so how have you explained/managed these? No I don’t have any CV gaps.
7. How did you convince an employer to give you a chance, to get a foot in the door of a suitable job? I’m really good at interviews!
8. (I'm thinking in particular of experience (and references). Starting in any old job as a first step toward something better may not be possible for a disabled person as the "any old jobs" available are unsuitable due to their disability. Is there a way to leap-frog past this stage?) I can’t help with this sorry!

1. I run my own business. This started due to childcare availability and continued because I love the variety of clients I get.
2. I am profoundly deaf. Lockdown was good for me (technologically speaking) as more people discovered Zoom and closed captions became normal. I request this now if I'm not hosting the meeting and use an AI note-taker to keep track of tasks and appointments. In real-life, its a combination of hearing aids, lipreading and guesswork.
3. I have been disabled all my life. My first employer was a bank, followed by a charity. I've always been upfront about my deafness (I get a lot fo 'you don't look deaf') as it's better than appearing rude or uncaring because I missed something.
4. I have a degree and industry-led qualifications. I usually look for ways to upskill or improve myself on a quarterly basis. My industry changes rapidly.
5. I am fortunate that my disability does not result in long absences.
6. I have worked continuously, with the exception of maternity leave.
7. This was tricky to start with. Once I had experience and could 'prove' I could do the job with references, case studies, and examples, it became easier. Most of my clients now seek me out.
8. I can't answer this for regular salaried jobs, but for freelance and your own business, clients care less about your personal problems or the time you spend at your desk and more about their results. If I had to start again, I would take on two or three clients for free (for a limited period) to prove I could deliver and then use that as a springboard.

@Idratherbepaddleboarding

Public sector, people centred role. I find a lot of neurodiverse people are attracted to this kind of work for some reason.

Interesting! That kind of work definitely appeals to me.

Thanks for the detailed reply. It sounds like you have got a really good routine and work/life balanced worked out. It's good to hear positive stories of autistic people who have managed this - gives me hope.

I have been disabled my whole adult life although it got much worse in the last 5 years and that is when i also- finally - got my diagnosis. It's a rare neurological condition that is poorly understood even most doctors. It is very disabling and fluctates a lot. I am often to too ill to walk and quite regularly lose the ability to speak, see, swallow or lift my head up so it is not a mild condition

What sort of role are you in, and is this influenced by disability? (Eg. physical disability so avoid manual work.)

I'm a lawyer. I was in a more senior role but that was requiring an increasing amount of time in the office and as I got more unwell I couldn't manage it so I looked for a less senior role as I felt that would be better for my body. So I have taken a substantial pay cut to manage my disability by having a very much work from home role.

What sort of reasonable adjustments do you find the most helpful? And how easy was it to get these?

Working from home. Being able to work short days when needed. Having a wheelchair accessible desk (not an issue at all, the whole build is brilliantly wheelchair accessible)

No difficulty getting them. In fact my public sector employer went above and beyond to make me feel like my disability isn't an issue at all and that I can ask for more adjustments as needed. They have never made it feel like a problem.

Were you disabled when you became employed, or later so had already proved your worth to employer?
If you were already disabled, what led up to your current role - eg. did you have to get qualifications? Experience elsewhere? And how did you financially support yourself during this time?

Both, became (more) disabled when employed. And then late removed jobs to a new role as I wanted to be home based and my original role wasn't suited to it.

I had qualifications - degrees - and experience. When I was too ill to work in my twenties I volunteered from home and I still do remote volunteering now for various organisations alongside my day job. I am also doing online study on a flexible basis to improve my qualifications.

How did you manage to pass the probationary period or avoid being managed out for performance/time off sick?

I had a fair amount of time off sick during the probationary period. They knew it related to my disability and never made me feel bad and in fact often encouraged me to take a bit longer to get better. I performed well when I was working so there weren't any performance concerns.

Do you have large CV gaps due to your disability, and if so how have you explained/managed these?
How did you convince an employer to give you a chance, to get a foot in the door of a suitable job?

I did have a gap as I was ill in my twenties. For a long time I had no diagnosis so I felt ashamed of it and just called it a career break. I did do volunteering (remotely) during that time so I talked about that too. Now I understand why I was ill I just explain that I was ill.

I am not disabled but I know the following in my close friend and colleagues circle:
Autistic: 1 university administrator, 1 lecturer, 1 lab technician. All women, work part time (but have kids, all 3 have at least one autistic DC). The first two WFH a lot.
Blind: lawyer. He uses text readers a lot, and I think has a specialist secretary. His sight has got worse recently but he's used text readers as long as I've known him (20+ years).
I am sure there are more. I know a lot of autistic adults because I've got to know parents of school mates of my DCs. Those that work are usually part time but that's the case for most parents of children with disabilities.

I had MS and Epilepsy. I've been in my role for 30 yrs. It was fine/okay ish until I started with the strokes (I've had 3 in 2 years) and they left me even more disabled.

DH reckons way more than half the people at his work are autistic, some of them quite severely. It's a scientific section of the public sector. They are hugely supportive of people with autism because they recognise their strengths so support their struggles

Ok I get it.

So you are just innocently and with no ill intent trying to amass anecdata around how what disability campaigners say are barriers to work, aren't actually barriers to work, days after cuts were announced.

Because after all, if one person has climbed over a barrier, that means everyone else can too. Perhaps it isn't really a barrier! Perhaps disabled people can just go ahead and work 40 hours a week and why wouldn't they!

Also, why is this in AIBU? What is your AIBU? I mean, what is your question?

Surely it's a good thing to talk about what might work, to talk about which employers might be supportive.

I am in a group for my rare condition and I found it really helpful to ask people what adjustments they asked for at work, what adaptations they use at home etc.

I have CFS and employment is impossible for me because I am not consistently well enough to be able to commit to working set hours/days per week. So I am self employed, and I do what I can but I’m very limited by my energy levels.

For example today - had a good night’s sleep last night, woke up feeling ok, did one job for just over an hour 9-10.15am, then felt completely exhausted, came home and rested, including an hour of sleeping, until 3pm, then managed another job from 4-6pm. I only take on work that is fairly flexible and I can shift around depending on my energy levels that day. I’d love the stability of employment but I can’t see it happening. If I lose my LCWRA and PIP I’m screwed as I can’t physically work enough to survive, I don’t know what I’ll do. I’ve had CFS for 10 years and this is the most productive I’ve been in that time and I’m aware that if I have a crash of my symptoms then I’ll be back to being bedridden, and that could happen any time.

I have PTSD, FND and autism. So physical and mental disability.
I work for the government- public sector role and I was already disabled when I got the job- I knew I would only get the adjustments I need in the public sector.
Yes to gaps in my work history. I have hand waved these as traveling and childcare related.
I'm a professional and retrained to that profession as an adult to get this role funded with credit cards and a loan. I have flexible hours and work from home 100% as an adjustment. Without this I couldn't work- I have had to take 2 days off because of symptoms this week with no notice and my boss has been nothing but lovely.