I suspect encountering any type of prejudice new to oneself is shocking.
There are costs to managing a disability that the able-bodied don’t have. For example, supplies to deal with incontinence and urological problems are a constant monthly cost that he has always had. When I had a good job with good benefits this was an annoyance more than a burden, we could easily deal with the cost. When I lost my job it became a problem and a significant drain.
Over the *long *term no, I don’t feel we had to make sacrifices, though currently there are problems. When I first met him and for most of our marriage he was employed and often made more money than I did. It’s the last ten years where that has changed. Now it’s a problem because we aren’t and can’t be a two-income household. We are trying to get him on disability but it’s very difficult, particularly in his case. The attitude is that 'well, he used to be able to work, why can’t he work now?" THAT is causing problems. Also, when we went to apply for food stamps some people in the welfare office were very negative, saying things like “Well, there are people in wheelchairs who have jobs, and you can walk, so you aren’t disabled” or “We have people with no fingers who have jobs, you can still use one hand so you aren’t disabled”. Well, yes, it would be great if we could find an employer willing to accommodate ALL his current limitations, but such does not, apparently, exist. There is also an attitude that since he has a college education he should be able to gain employment where he is simply required to think and not do anything physical. I suppose Stephen Hawking is such an example, but there is only one Lucasian Chair in Mathematics at Cambridge and, as my husband is NOT that level of theoretical physicist he is not qualified for the post in any case.
That illustrates the problem of the myth of the super-gimp. Just because ONE disabled person is able to do a certain thing does not mean ALL disabled people can do that, or that all barriers have fallen, or that people don’t still have limitations. And, again, there really is significant prejudice out there. There have been instances where people have clearly refused to hire him due to simply not wanting the disabled around, occasionally saying directly to his face that even though he was fully qualified to a do a job they wouldn’t hire someone crippled.
So, right now, as he is NOT officially declared disabled what’s hurting us is the limbo status. Half the welfare office insists he must come down and look for work and the other half is convinced he is truly disabled and this may well result in our benefits being terminated until he either gets a job (which he can’t - I’m able-bodied and have a horrible time finding work in this area, the disabled are pretty much SOL) or gets officially on disability. I have already had one of the Welfare Office Bitches muttering about disability being a scam and he’s just lazy where/when she thought I couldn’t overhear her. The attitude with some people is that if you can stand upright and walk at all if you don’t have a job you’re lazy and have a bad attitude. There’s much talk of employers being required to make “accommodations” yet this “work center” doesn’t even have seating that he can use without risking pressure sores and will not make that accommodation, seeing it as unnecessary. As my husband can’t realistically drop his shorts and show off the scars from skin grafts required to repair the damage from prior encounters with bad seating this is just one more example of an insurmountable attitude problem. Nor can he pass most drug tests for jobs requiring them due to the medication required to handle chronic pain from damaged nerves - and offers to get him into “drug rehabilitation” just display a total lack of understanding. He does not abuse drugs, he uses them for legitimate medical reasons. He requires that medication to function at his peak ability, it’s like suggesting a diabetic should get off the insulin. People who ask “why doesn’t he get this/that problem fixed?” don’t understand that much of his problem is unfixable - that’s why he’s disabled, it can’t be fixed! Again, he has only the use of one hand, but for all their talk about how employers can get keyboards for the one-handed they don’t have one, and won’t get one. It comes down to telling people that accommodations are required yet refusing to make any accommodations. Just looking around the place I can see that anyone in a wheelchair would have a terribly difficult time with their doorways, hallways, and the layout of their rooms which simply do not provide adequate space, ditto for anyone with a walker or other mobility difficulty yet they prattle on about how being disabled is no longer an obstacles in finding work. They’ve also rather archly informed me that since it is not legal to discriminate due to gender or age such things no longer exist. No doubt they also tell black people that there is no longer race bias in hiring.
And I’ll stop that there, because I don’t want this to end up in the Pit.
In sum - if you have a middle class income or higher being disabled is a financial annoyance in our case, but if you’re poor it’s a fucking nightmare. Without insurance his medication runs about $285 a month. His incontinence supplies around $60 a month. That’s several hundred dollars a month that are NOT counted in “essential expenses” when calculating household aid. Sure, they’ll take into account rent and utility bills and even the cost of gas for the vehicles but NOT the costs incurred by a disability! So it winds up that we supposedly have all this “extra” money and we don’t. The assumption is that if you ARE disabled you’re officially stamped so and if you aren’t so stamped you’re not disabled and you are “choosing” to spend your money on these things. The system totally ignores that it takes YEARS to get onto Federal disability in most cases.
Currently, he’s in a bizarre limbo, as I mentioned. He’s got a handicapped placard and state subsidized insurance that covers his maintenance medication, but nothing for the incontinence supplies and there’s that bullshit with the food stamps/welfare office/looking for work. Sorry for going on about that, but it is THE biggest source of stress in my life right now.
He would like to work - he has started and run three successful businesses, he’s quite the entrepreneur - but he can’t. He’s tried. There have been many people who have tried to find a way to accommodate his limitations so he could be hired (in sharp contrast to some of the prior mentioned bigots) but it’s not possible any more.
I notice that when you see someone on TV saying their disability is an inconvenience they are invariably middle class or better. Being poor and disabled just sucks. It’s definitely worse than being able bodied and poor.
I’ve also had medical people suggest with a straight face that I should divorce him in order for him to be officially destitute and get onto Medicaid (apparently they are unaware that the welfare office thinks he’s able-bodied so that wouldn’t work anyhow). Since he has become “unable to work” level of disabled I have had some people tell me to divorce him so he won’t “pull you down”. Appalling, really.
However, MOST people don’t do that.
I hasten to add that he does continue to do what he can. It’s just that “what he can do” is much less than it was 20 years ago. One reason I’ve been very careful about my own health and body is that I am the only strong back in the house. If the driveway needs to be snow shoveled or a car pushed or something heavy lifted or moved I’m the one who has to do that. Paradoxically, his disability has been an enormous motivation for me to remain as able-bodied as possible. I might not be as strong and healthy as I am today if I had not been living with someone physically disabled. When I was severely ill in 2007 and took a couple months to recover he was having to recruit a friend to help him around the house while I recovered my strength, it was in many ways frightening to realize just how dependent he was on my good health. That’s when he finally woke up and started applying for official disability status, just in case something happened to me. I wish he had started the process years earlier, but that’s water under the bridge now.