Is this behavior entitled or is it adjustment to disability?
November 13, 2023 10:55 AM   Subscribe

My friend got long covid, was on disability, and now needs many accommodations at work. He keeps asking us for help in his job search, and expresses anger whenever his expectations aren't met by employers or by us. I want to take space for a while, but I don't want to contribute to ableism. Can I get some perspectives from disabled people?

I have a friend group who originally met through work. One of them ("Henry") has worked with a few of us, and is known to be hardworking and competent. He got long covid in 2021 and went onto disability leave. At the start of this year (2023), he said that he's ready to return to work but that his employer AcmeCo didn't want him back. He expressed feeling surprised and betrayed. He started a long period of negotiation with AcmeCo.

During the spring, while he was still negotiating with AcmeCo, I referred him to a job opening at my own employer NewCo. After a month, Henry reached out to me. He explained that after long covid, he requires accommodations in the form of only working a few hours per day, and not having stress or deadlines. (Before long covid, Henry worked 40+ hours and had daily deadlines.) In order to avoid bias, he didn't want NewCo to know about his long covid diagnosis, and he told the bosses about his limits on hours and no-deadlines without giving the reason. 

After hearing his limits, NewCo became uninterested in hiring him. Henry asked me to intercede and advocate to the bosses at NewCo on his behalf. I declined to get involved, and Henry got frustrated with me.

Around that time, a mutual friend Judy asked me for advice. She had been working alongside Henry at AcmeCo. It turned out that Henry had asked AcmeCo for a new role with limited hours and no stress. AcmeCo didn't want to create the role and instead offered Henry a severance of 8 months salary. Henry was angry and insisted that AcmeCo create a role for him. He asked Judy to intercede on his behalf, and she actually did. She went to her boss and advocated for Henry. Her boss told her to stay out of it. When Judy asked me for advice and said she felt caught in the middle, I told her to stop interceding and let Henry handle it himself.

In the past 6 months, each time we saw Henry, he said many negative things about AcmeCo and how they treated him badly. He said they were stingy, and he expressed a lot of anger. It seemed unreasonable to me since they gave him 8 months salary as severance. I stayed quiet during those times, or tried to change the subject.

In the summer, Henry found a new job that granted his accommodations. He only needs to work a few hours per day, with no deadlines, and he gets paid an excellent salary. We were all happy for him. However, recently he started contacting many of us again, saying he wants Judy to go intercede with AcmeCo and get him a job there again, or asking the rest of us to help him get a job at a more prestigious company.

I feel burned and want to take some space from Henry. I will be polite but I want to keep our contact minimal for a while. However, I know that people who get a disability often get shut out by people in their social group, and I don't want to contribute to ableism.

Henry's behavior this year is different from how he used to be, before he got long covid. Could his behavior be a result of the denial / anger phase of adjusting to his disability? Is it likely to change in the future? I'm especially looking for perspectives from people experienced with disability.
posted by vienna to Human Relations (14 answers total) 9 users marked this as a favorite
 
Best answer: Person with a similar disability here...

People like us, in this situation - we're frustrated. A lot of us are living pretty precarious lives. We've had parts of our lives, our abilities, our SELVES snatched away - the prospect of choosing between 'unable to work' and 'employed but unable to give what it requires' is extremely scary. If I weren't able to illicitly WFH due to the patience of my coworkers, I'd probably have lost my job.

But Henry is in a job with some (IMO above and beyond) accommodations and an excellent salary. Good for him. If he's looking for different work, feel free to send openings his way, introduce him to people, be a reference - the common things - but if he asks too much of you, then, "Sorry, I can't help you out in that way" oughta suffice.

Asking somebody to go to bat for you with their employer is a BIG, BIG ASK. It is more than a favor, since it asks somebody to potentially go out on a limb and risk their own career. And fer chrissakes asking somebody to intercede in negotiations about the specific employment terms - that's above and beyond! It's not a reasonable ask!
posted by entropone at 11:13 AM on November 13, 2023 [35 favorites]


Caveat that I don’t have long covid/ME but my partner does and I understand it pretty well - Agree with what entropone said above. It’s good that your friend has found a job he can do and be well paid for, many people with this condition can’t work at all and it’s likely been a very stressful and frustrating time for him worrying about whether he’ll be out of work long term due to a new disability. I’d say it’s not useful to think of it as ‘entitlement’, disabled people are ‘entitled’ (legally) to reasonable accommodations at work and he’s found an employer that found his requested accommodations reasonable.

I think you’re better off declining requests to help with job stuff and thinking about how you can support him in other ways. Some examples could be - ask him if he’d appreciate some company and go hang out with him at his place, even if you haven’t had that kind of friendship before, this kind of chronic illness can be incredibly isolating. Since you all know each other through work and maybe have that context for your friendship, it could be that that’s simply the way he felt most able to reach out to you for support. You could also maybe arrange a meal delivery drop off, which could be especially useful if he has a partner who is doing a lot of care work for him and maybe struggling while he’s exhausted from the small amount of work he’s doing (because in all likelihood it will be exhausting to him even if it sounds like nothing to you). Try to learn more about energy limiting conditions and how they affect every area of your life, and give your friend some grace while he’s going through something you hope you never have to experience first hand.
posted by chives at 11:29 AM on November 13, 2023 [3 favorites]


Best answer: I think there's another lens to consider here and that's trauma. While Covid and lockdowns may have been less traumatic for some people, I think for a lot of people who have had really bad impacts from Covid - and long Covid definition qualifies - you can see patterns that are familiar to those of us who have had PTSD for other reasons.

For me, your friend's attempt to get AcmeCo to reset the clock, sort of* - to give him an equally fulfilling role in an equally prestigious workplace - is understandable and familiar on a human level. He wants his old life back, on some level, and he's kind of flailing around trying to get that in a bit of a ham-handed way. I don't think it's an accident that he's reaching out to people who have known him through that same workplace.

I would hazard a guess that these flares of anger/asking track with something that's going on for him personally - stress, triggers, etc.

As someone who has had those same feelings,** I release you from any obligation to play into them. You are not required to fix this for him. You don't have to find him or help him with any job, particularly not as it risks your reputation, especially while he's still flailing.

I would suggest a script like "hey, I'm really sorry this has all happened to you. I can't help with your job search." And then if you want to continue to be a friend, definitely reach out at other times and do or be there for other things.

If you want to advocate for a workplace that is more accommodating and work that is more universally designed, that is awesome! But I would do that separate from this one individual.

* Modern Western workplaces are not in any way designed for this so this is like a go back to the womb fantasy.

** After my daughter died I spent hours every week reading natural birth movement-focused forums (pro and con) for no good reason at all - it was an obsession. Every time I got scared in my next pregnancy I was on there. In hindsight I can see that was an ongoing attempt to rewrite what happened to us, whether that was through preventing that experience for someone else or just mistaking my "knowledge" and "processing" for actions that would have cared for me better...which is okay, I mean, I got through it.
posted by warriorqueen at 11:53 AM on November 13, 2023 [22 favorites]


I would treaat his complaining the same way as any other situation where a friend is super absorbed in a problem that I can't do anything about and am getting tired of hearing about it.

First, think about your friendship with Henry. What do you like about his as a person? What did you enjoy doing or talking about with him before all this happened? Is there anything more to the relationship than just "we used to be co-workers" Bottom line: if you magically get Henry to stop talking about work, employers and job hunting would you want to be friends?

Assuming the answer is yes, then try to focus the relationship on the parts that make it worthwhile. When he starts going off about job stuff, offer some sympathy and then redirect.

You could just redirect or you could signal what you are doing: "That sounds hard but how about if I give you a break from thinking about all that and we do x instead." If that doesn't work you can get clearer:'"I know this stuff is really hard for you. It is hard for me just listening about it. Is it OK if we focus on something else instead?" or "I'm not a very good listen-to-problems friend, I'm a much better "let's talk about something else and a take a break from the problems" kind of person. How about if we xyz?
posted by metahawk at 11:57 AM on November 13, 2023 [2 favorites]


Best answer: It was entirely reasonable of you to decline to personally advocate for Henry at your company, especially as he did not want his disability disclosed, so you would have been pretty effectively blocked in what you could do or say. You don't need to be part of his next job search and can just say no to that. You can provide him sympathy for the things that have been hard for him, even if you're secretly also thinking 'okay but also, eight months severance was pretty generous!'

It's also entirely reasonable that Henry is frustrated with an accommodations process that is often a lot more difficult than people realize it will be before they become disabled, and with the serious trauma and identity shifts of the newly-disabled. Some of that probably will change a bit, some of it may not, some of it is just a process of continually getting whacked in the face with new ways your disability runs up against societal structures, forever, just when you thought you were getting pretty well adjusted.

You can take the space you need from this friendship. But if there are types of help and support you have to offer him that aren't job-related, that would be worth leaning into. It sounds like your friendship has become about this one thing, and presumably there was something other than job-hunting that brought you together or that you both like, or some practical way you can do something nice for him that isn't about the job hunt. When you are ready to resume more contact with him, see if you can reset your interactions in that direction.
posted by Stacey at 12:01 PM on November 13, 2023 [6 favorites]


I have experience with this or any disability, but I do have experience with unemployment and job searching, which is that it’s left me with an unpleasant chip on my shoulder about work. It’s very easy and very common to become very embittered, very fast.
posted by Fiasco da Gama at 12:53 PM on November 13, 2023 [5 favorites]


There is definitely a period of adjustment/grieving your old life with a new disability, plus definitely trauma as warriorqueen mentioned, but that doesn’t mean you have to be a rude person about it to your friends. You can definitely set a boundary with him around work, and see if a friendship can be kept without that, but it isn’t ableist to not want to deal with his anger.
posted by ellieBOA at 1:06 PM on November 13, 2023


My experience of having friends with disabilities that limit their ability to work is that they ask for help a lot, because they need help, but also your friend should understand you having boundaries.
posted by momus_window at 1:44 PM on November 13, 2023


Your friend is probably still figuring out his needs and what is reasonable in his new situation, and also that if you don’t ask, you won’t get.

As a general matter, this is true, but asking a colleague to get involved in your RA process, which, because of the personal details involved, should only be between you, HR, and, if necessary, legal and whatever supervisor or expert is necessary to determine what the essential demands of the role are and how it can feasibly be modified, is just so inappropriate that I would have to operate on the assumption that this guy's judgment is temporarily or maybe even permanently out of whack. I agree strongly with the advice to focus on whatever pleasant experiences you can have outside of work with him, because this is not a form of entanglement that will benefit either of you, beyond temporarily easing his bitterness.
posted by praemunire at 1:52 PM on November 13, 2023 [1 favorite]


Regarding whether it will change: I have had to recover from an illness that affected my brain, and it was a deeply weird time. We clearly don't know what all long covid is yet, but the accommodations you mention sound like they may be related to cognition, and if that's the case, it's not like it's necessarily just needing limited hours or what have you. It could extend to things like misjudging social situations that he'd have navigated differently before. Feelings like anger and grief are legitimate possibilities too, of course, but this might also be, at least in part, a manifestation of the underlying problem.
posted by teremala at 2:21 PM on November 13, 2023 [1 favorite]


Best answer: I have a fatigue and cognition based disability that is not long COVID. I also do some disability advocacy and teach disability law (but I am giving practical advice based on my own experience rather than legal advice). I think others have covered the grief, frustration, and anger aspects well. The notes about who should be involved in the reasonable accommodation process above are also important.

When I started my first full time job after diagnosis and while my treatment plan was still not fully worked out, I had some unrealistic expectations about what was possible in the workplace and also didn’t fully understand which accommodations were necessary for me to do the job well versus which ones would just be nice. I was angry, ineffective, and not a good advocate for myself.

Spending some time working with a person in the local Vocational Rehabilitation Office along with talking to others with similar disabilities was hugely helpful in managing my expectations. I now have better calibrated expectations for what I need that are reasonable for most employers and I am successful in my field.

If Henry is open to advice, I would recommend that he consider speaking with his local Vocational Rehabilitation Office. While the quality of the people who work in the offices varies widely, they are designed to help with these situations. They will be able to help with calibrating his accommodation requests, recommending accommodations that have worked for others with disabilities, and, crucially, with most other aspects of his job search. They can also help with arranging transportation and applying for other benefits he may be eligible for. If Henry asked me for practical advice, I would tell him that he should wait until after he was offered a job to talk about accommodations and look at JAN (the job accommodation network) to see how reasonable accommodation requests are typically worded and what they typically look like. He might find something on that list that both helps him more than what he is currently asking for and is easier for an employer to grant.

I would also recommend he join an online or in person support group for people with his or similar disabilities. He may also want to look into community mental health clinics.

If Henry is willing and able to put in the internal work on grieving and processing and his doctors are able to work with him on a treatment plan that gets him to his maximum functionality (which won’t be what he had before, will vary greatly, and is a long, frustrating process), this can get better for him. He has to both want to and be able to, though, and that is not something that is your job to do for him. It took me 5-6 years and losing a job due to underperformance and not asking for the right accommodations for me to get to where I am now. It is not an easy or a short process.

For you, I would note that there are a lot of people who are better qualified to help him with finding a job that he can do than you are and it is not ableist to tell him that and direct him to those resources.

I would take the advice up above to spend other time with him though. These disabilities can be very isolating and being left behind when others have returned to more or less normal is rough.
posted by eleanna at 4:25 PM on November 13, 2023 [17 favorites]


I am disabled with a different disability that also makes stress and deadlines problematic. You say that you don't want to contribute to ableism. I don't think failing to intercede is contributing to ableism, but I do see some ableism in your description - I'll try to clarify it.

He said they were stingy, and he expressed a lot of anger. It seemed unreasonable to me since they gave him 8 months salary as severance. I stayed quiet during those times, or tried to change the subject.

Your friend, prior to his disability, had what sounds like a fulfilling and prestigious career with his employer. He went on disability leave with the expectation (and probably justified expectation) of returning to that career. But the employer, like many employers, and the manager, like many managers, likely displayed internalized ableism, and assumed that upon your friend's return from disability leave, he would be just as he was before - back to that 40+ hours, daily deadlines grind. They were not interested in creating a role at the company for him with part time hours and no stress at all. It's clear that these needs *can* be accomodated in that industry, because your friend *has* found a job with these accomodations. So I would say by that standard that AcmeCo in fact did *not* treat your friend well. It is normal for your friend to express anger at not being treated well - at losing a job and a career as a result of disability when it wasn't necessary.

But you say "It seemed unreasonable to me since they gave him 8 months salary as severance". I think that assumption, however, may be based in your expectation and norms around workplaces and disability - your unconscious bias and understanding that it's not normal or reasonable for someone to have no deadlines on their work, or to have no stress at their job, and so of *course* AcmeCo wouldn't want to have that, and weren't they such mensches for giving him a "generous" severance anyway. But that severance, in fact, rather than being a generous offer, is quite likely incredibly well calculated at avoiding liability for the company, since they are in essence firing him for disability. I would wager that it is calculated to be significantly less than they think a lawsuit would cost them, but enough that your friend would hesitate to lose it, and I'll wager that he had to sign an agreement not to sue them in order to receive it. I say this because I have received a similar severance, in similar circumstances, and a similar no-sue agreement was provided in circumstances that once I hit law school I realized I easily could have sued for.

In these moments, your friend wasn't asking you to risk anything - he was asking for your sympathy, which you were unable to give because of unconscious bias. I don't think that's an unreasonable ask, and I think it would be worth asking yourself why you feel that it is. I think it might be important to sort out why you feel so uncomfortable around your friend's anger. Can you separate out the requests for help that involve risk from the requests for help that involve emotional support?
posted by corb at 7:11 PM on November 13, 2023 [10 favorites]


And of course, I was canned (they called it something else) and blacklisted (but they can't find enough people to work) for asking for accommodations, and once I figured out what was happening, it was too late to do anything about it.

Not very positive, I'm afraid....
posted by Rumi'sLeftSock at 7:16 PM on November 13, 2023 [1 favorite]


I'm disabled, and have largely given up on employment. It sucks and I miss my financial independence. And I miss the future I pictured for myself. So keenly.

I've learned that employers make things ridiculously hard, will put on a facade of being accommodating, and then weasel their way into shoving out anyone who inconveniences them. So as lovely as Henry's new job might seem, he probably feels on edge.

But I personally don't think it helps to think about ableism.

Think of it as a divorce - he's splitting up with his future, it wasn't his idea, it's having a huge impact on his finances, he needs support while he gets back on his feet. He's stuck in a state of shock and grief.

What would you do for a friend going through a nasty divorce?

Do that.
posted by champers at 3:14 AM on November 14, 2023 [7 favorites]


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