How to work meaningfully with enough to support your family while chronically ill?

[ygolo]

I'm curious how people do it.

I've struggled with illness most of my life and both sides of my family have bad and not entirely overlapping sets of illnesses.

Until a little over a year ago, I managed to do meaningful work for good pay.

But the severity of problems ramped up significantly last year. Luckily I got some support (unexpectedly) from academia. It wasn't enough to keep me out of debt with all the bills, but it was something.

What strategies and resources do people use?

How does one continue a meaningful career that supports ones family once illness hampers their productivity (say by a factor of 15--I've measured)?

I've posted before this link in other threads:

Chronically Capable | Flexible Jobs for the Chronically Ill

Chronically Capable is a platform that connects the 133+ million Americans who suffer from chronic illness with employers who offer remote work, great benefits, and flexible schedules.

www.wearecapable.org

There's also this:

Home - Chronically Academic

Network of Academics with Disabilities and Chronic Conditions We are Chronically Academic, a network of academics with disabilities and chronic

chronicallyacademic.org

I've searched for grants for disabled people (not a veteran myself, but it's good there's some funding for them). I've searched for funding both for research and for entrepreneurship for disabled individuals, but I find mostly is funding for work about disabled people not for them. Quite frankly, this is annoying to the point of almost being infuriating. It's like the only role the us government sees for disabled people is the role of victim.

I personally just need accommodations to work from home(because neither public transit nor housing is getting fixed any time soon) with flexible hours and deadlines (I particularly need to lie down a lot after the strokes). Other s would need other accommodations, but I believe these would cover a lot of people.

It would also be ideal for me to work in critically meaningful projects (and I have a lot of ideas) that aren't time critical.

I wanted to see if anyone has had better luck finding resources.

Edit, found more resources. Might be useful to some:

ABILITY Magazine

ABILITY Magazine is an award winning publication, providing new insights into our individual levels of ability.

abilitymagazine.com

abilityE

disABILITY Talent Source for the Entertainment Industry

abilitye.com

abilityJOBS

The leading employment site for job seekers with disabilities. Employers now hiring local, nationwide and international.

abilityjobs.com

 

[ygolo]

The closer you get to actual funding, the more it become about disability than for disabled people even in the private sector.

Disability & Philanthropy Forum

The Disability & Philanthropy Forum is a hub for learning about disability inclusion in philanthropy.

disabilityphilanthropy.org

But at least they are trying. That's why there are plenty of "jobs" (overwhelmingly low-level). The money does seem to go more to virtue signaling than to actual virtue. I don't think it is intentional or malicious, it just seems to be the way things work.

 

[ygolo]

I think once productivity is actually hampered, the only thing that can help is nepotism. Generally hiring someone who is unable to meet productivity standards of abled employees isn't a reasonable business decision.

Well, that's depressing. But this sentiment is one reason why I am looking for non-employee type work (e.g. Entrepreneurship, independent research, content creation, book writing, ...)

Also, I was measuring "productivity" by volume of output. That is by lines of writing (be it code, proofs, prose,).

I feel like if quality of what is written can make up for volume, the real productivity loss can be not as much. I find I do spend a lot more time thinking while having to deal with vertigo. If I can write in a horizontal posture, for me in particular, I'd recover a lot of additional productivity.

Here is the math I was thinking about:
Let personal practical productivity be measure simply as:
P = (Money made)/(Hours worked)

I used to consult/contract at a pretty high rate. Basically, for me I would directly charge P. But for the company that hired me, they need to be getting at least P value as well if not more. That was definitely true before. But now, it is questionable. Even after events, I didn't charge when I couldn't work. But I ran into a problem where the company I was contracting for was basically wanting pure output. That was never my style even before health events. But it was exacerbated by those events. I used to deliver value by influencing use-cases, architecture, requirements, in addition to pure code and documentation output. But the last client really wasn't having any of that. With my prior gig, the client was ecstatic.

If I take a salary position, the expectation is that they are paying for an expected output. I do feel like I have the ability to meet milestones with a lot less hours worked than the average person in my field. But I am not sure I can overcome a factor of 15 that way. At best, maybe 10. But again, this would be for difficult algorithmic problems, system architecture, gaining clarity, etc. For cookie-cutter code, I am not going to be better. However, with AI available, I may work on having it do cookie-cutter stuff at a decent pace (everyone can though).

This is where productizing something comes to mind. Suppose I come up with something, let's say its content (book, online course, ...).
The equation is the same, but I have some other levers:
P = [(units sold)*(unit price-unit cost)-all fixed costs]/(Hours worked)

This is a gross over simplification. It depends on a lot of things. There is no guarantee of customers. Lot of competition.

But thinking about it more, how different is that from offering your services for a job? Interviewing is like needs finding and customer acquisition. Meeting milestones on the job is like producing your product.

Edit:
This has me thinking. Given the "Jobs to be Done" framework for productization. Why don't companies put out adds that are Product Requirement Documents (PRDs) in addition to Job Description(JDs). I mean the government does that quite a bit. Maybe government contractors do that for sub-contractors. But it certainly isn't wide-spread.

What if instead of employers thinking, "I need a person to do X" and advertising for that, the norm becomes "I need a product that does X", or "SaaS that does X"? I feel like we are moving towards that world. I mean there are things like fiver and freelancer sites. But the products asked for are so bespoke and small-scale they are almost just asking for services indirectly.

 

[ygolo]

Anyone with mobility issues and other limitations willing to meet and talk to me? DM me. Either here or on Discord.