• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Reasonable Accommodations

Messages
15,786
I expect that I will have to fight those things when I go into meeting rooms. I expect I'll have to read a lot of disgusting stuff from the employers' and insurance companies' points of view while I do research and prep (and I am ok with people linking me that kind of information, with warning if possible). But I don't expect to encounter that attitude when I ask for help from fellow disabled people.
Nee mentions golf an awful lot. There might be a particular post you're referring to which is less nuanced, but I thought that https://lindanee.wordpress.com/2017/01/02/living-with-a-disability-claim-can-i-still-play-golf/ has a pretty good explanation. Essentially it says that if a claim centers on not being able to work due to disability in doing activities similar to golf, golfing can be taken as an indication that the disability isn't severe enough to prevent the ability to work.

I haven't seen anything about golf in the context of ME/CFS, where there is fluctuation and delayed symptoms. But any statement about any disability is rarely applicable to ME/CFS, due to the unique nature of the disease. Hence I don't think Nee meant the golfing example is meant to be applicable to ME/CFS, but it would be rather awkward if she had to add "except ME/CFS" to every statement she makes about disability.

Even the example given of golfing with FM is given in a different context - someone entering a professional tournament, not whacking a few balls while someone drives them around on Sunday. I wouldn't agree that it means they don't have FM or the severity claimed. But I understand the claim that the FM patient is choosing (and able) to endure symptoms from golfing which they could instead choose to endure in a regular job.

Her position on that is a bit hard-nosed, but I think she's doing her readers a favor. People need to know how it's going to look to the judge, and what the insurance company is going to be claiming. Saying "everyone should be allowed to golf" might be true, but disabled people are going to get screwed over if they go out and do it. They're going to have to in front of a judge and explain why they can golf but can't work, and it's going to make them look untrustworthy. It shouldn't, but that's reality.

And even as an ME patient, it's better to not be in the position where you're trying to explain that a day of golfing means you're sick for two days afterward, and why you couldn't have been working instead even if it has the same consequences. We have a right to have a social life and enjoy life ... but the insurance industry doesn't agree, and the disability benefits system is more concerned with slashing costs than with our standard of living.

But I do disagree with her claims about cognitive involvement in golfing. Cognitive impairment doesn't prevent golfing, it just means it'll be done badly :D
 
Messages
90
I ended up requesting intermittent time off through FMLA instead. That would give me the ability to take up to 12 weeks (60 days) of unpaid leave over the next 12 months. I can use that to create a reduced schedule, at least for now, even though it's not really designed for that purpose. That allows me to sidestep the negotiation process with my managers. It does mean I won't get any accommodations while I'm at work, but I think I could benefit from some more time to figure out what I'd even want. Hopefully the FMLA paperwork will go through.

I also want to say thank you for the help so far. And apologies for expressing myself in a way that was harsh and/or panicked. I have been abused in the past by people in positions of power whose job it was to help me. I took down some of the posts where I was most emotionally raw (because this is not a members-only forum). In future, I will work on a better way of communicating what is going on.