Tag Archives: caregiving
I am apparently a month behind as I originally dated this for October. Oh self. If it were October, I wouldn’t be so far behind! Wishful thinking?
Captain Kitt at A Gentle Nerd of Leisure: Our Mental Health System? More Mental than Healthy! (Note this post also includes discussion of eating disorders, self harm, and sexual assault but mostly focuses on experiences within the Australian mental health system) (via vass)
Thing is, often those services are really hard to access! I’m great with search engines – thanks to a librarian Mother – so it’s easy for me to find where the services are. Actually getting help from them? Not so easy.
Laura Hershey at Spinal Cord Injury and Paralysis Community: Fairness for Attendants: Enacting Justice in an Unjust World
We can start by acknowledging the profound disconnect between the importance of the work and the compensation it offers. In understanding and analyzing this, we can call upon a radical understanding of how disability justice and worker justice intersect. Providing hands-on personal care has acquired over the years an aura of sentimentality. People are assumed to do such work out of pure compassion (which translates as pity), or because “it’s so rewarding” (rewarding in a vague, emotional, non-material sense). Within this framework, disabled people embody neediness, while support workers cheerfully fulfill our needs. Disabled people are passive objects of support workers’ active “caregiving.”
Elizabeth McClung at Screw Bronze: Aren’t You Proud?
We are, disabled and Able Bodied, all types of bigots, and one of the most supported forms of bigotry is how we encourage each other to give in to our fear of illness, and altered human function and form. Drool, and averting the eyes is ‘doing you a favor’ – haha. Yes, because having everyone glace, look away and then talk about you, because your being alive makes them uncomfortable is helping me? No, helping them. It is no different than spotting who the odd one is in grade school, and somehow, they end up with no friends. They are stared at. They are, as you will well know if you were one, asked, “Why do you keep coming?”, and the idea of invitation to a party, or even having anyone show up at one you host is laughable.
crabigail adams at if you don’t have anything nice to say, come sit here by me: i am disabled
of course, this is a fixed income. if i find one day that it’s not enough money to get by, i don’t have any options. i can’t apply for a better-paying job. i can’t further my education in hopes of a professional career & the attendant boost in income. this is it. & there are other caveats as well: if i ever decide to live outside the united states, i lose my disability money altogether. if i ever get legally married, the government will pull the extra money i get from the disabled adult child program & i’m back to just my $525 or so in disability money. i would have to rely on my partner to support me financially, which is a lot to ask of someone, & which is something that makes me very uncomfortable. i’m not sure what the rules are around having assets (ie, if i were to sign a mortgage, even if i wasn’t the sole person responsible for paying down the mortgage). i’m not sure how social service programs i may be eligible for if i were to have a child (ie, WIC) would impact my social security income.
Casekins at If My Hands Could Speak: Martha’s Vineyard – Utopian Society (Caseykins is not Deaf – I’m linking this because the history is very interesting.)
The prospects for deaf people on Martha’s Vineyard were completely different. Many of the former residents of the island were interviewed, and they paint an idyllic picture of what it was like to live in Martha’s Vineyard during this time. Because everyone had a deaf family member, everyone in the community knew sign language. Deaf people were farmers, store clerks, anything they wanted to be. Hearing people would sign to each other over the large expanses the island farms created, a deaf person could walk into a store and the clerk would always know sign. Deaf people were even elected to high political office, becoming mayors and council members for the island, a thing unheard of in the rest of the country. When telling stories about the community, the people who were being interviewed could only remember after much prompting if the people they were talking about were hearing or deaf.
I’m closing comments on this one because I’m hip-deep in alligators (do people still say that?) and I always feel bad when people’s comments sit on Recommended Reading posts for days until someone can look at them.
I always love when I can do a ‘doing it right’ edition of Dear Imprudence, and this week we’ve got a doozy from the live chat with Prudence:
Everywhere, USA: My older siblings financially support and care for my sick elderly parent. My parent is admittedly happy as they do not want to live out their days in a nursing home. I live five hours away and get home only two or three times a year and do not earn enough of an income to help. While I appreciate my siblings’ efforts, I disagree with the diet my parent is fed, which is not healthy and caters to my parent’s every wish and whim. I also think that a nursing home is better equipped to care for my parent. This has created a divide in our once-close family. What can I do to narrow this divide?
Emily Yoffe: You can pitch in or shut up. If you’re a five-hour car ride away, you can come on long weekends and prepare the kind of healthy food you think your parent should be eating. Since you contribute nothing financially and rarely visit, and the other siblings have taken on the burden of caring for your ailing parent, and making him or her happy—as you acknowledge—be grateful they have relieved you of this burden. Stop complaining, start acknowledging the sacrifices your siblings are making, and do more so that when it’s all over, your siblings don’t forever resent you.
Let’s see. Everywhere lives five hours away from Aging Parent, doesn’t contribute financially, and doesn’t provide any other support. We don’t know what the circumstances are behind this; it sounds like Everywhere may work at a not so great job that pays poorly and doesn’t provide a lot of time off for coordinating trips home, so it’s good that Everywhere’s siblings are capable of providing care, since Everywhere cannot. This person ‘appreciates’ the ‘efforts’ of the siblings who are acting as care providers to prevent Aging Parent from being instutionalised, but disapproves…of what they are feeding Aging Parent. Because Aging Parent is being fed the food ou likes.
Solution? Stick Parent in a nursing home, of course! Because clearly community-based care from family members is inferior and wrong. Obviously Aging Parent has no established friendships or relationships in the community that might be disrupted by being forced into an institution. And it’s clear that ‘force’ would be involved here because it’s pretty strongly indicated that Parent is very happy to be at home, with family members. I wonder who will be paying for that nursing home, since Everywhere claims to not be earning enough income to help; nursing homes are rather expensive.
This sounds like a divide Everywhere has created, and that’s why I was glad that Prudie came back swinging. Although I could have done without Prudie’s referring to Aging Parent as a ‘burden’ and caring for a family member as a ‘sacrifice,’ the rest of this advice is right on point. Everywhere does indeed need to either start getting involved in caregiving, or zip it.
It doesn’t sound like Aging Parent is disabled, but this type of dynamic occurs both with people with disabilities and older adults. Family members chomping at the bit to pack them off to an institution so that they will stop being a bother. This a narrative that’s also supported and reinforced by the society we live in; look at this letter, where the person tries to claim that a nursing home is ‘better equipped’ to provide care than Aging Parent’s own family. I’m really glad that Prudie pushed back hard on this, because my jaw actually dropped when I was reading the question.
There’s a new doctor at Naomi’s practice, Dr. Fife, a genetic engineer who uses a wheelchair who pressures Naomi into agreeing to select for an embryo for two patients with dwarfism to allow them to created a baby who also has dwarfism. Naomi is reluctant but agrees until she learns that these embryos will also give the future baby a 40% chance of developing some kind of cancer (which Lauredhel over on FWD points out, is the baseline cancer risk for the US population).
This Carnival has an optional caring theme, thanks to Australian Carers’ Week (which was October 18 to October 24). The theme for this year was “Anyone, Anytime, Across Australia”, which I modified to “Anyone, Anytime” for the purposes of the DUFC.
On Wednesday I read that one of my blind friend’s in Utah just experience voting by himself for the first time thanks to his voting machine having built in text to speech. On that same day, I also read that the blind in Denmark not only don’t get to vote by themselves, they have to have a council member present when they’re voting. This rule was supposedly implemented to make sure that the sighted helper wasn’t pressuring the blind voter to vote in a particular way, but what it really does is just strip that voter of their right to privacy.
Crazy is something altogether different. Crazy is delusion, psychosis, mania, schizophrenia. Insanity, in the depths of society’s psyche, is jabbering in tongues rocking back and forth in a padded room. It can’t be trusted. It is the serial killer, the mother who kills her children, the man who laughs while committing the most vile crimes – this is what “crazy” conjures up in the minds of the general public.
This terror, this nightmare looming in the dark places of our collective consciousness is harmful. Incredibly so. It means that people who are not neurotypical are stuck with the paradoxical choice of lying or being mistrusted. Perhaps more importantly, it makes us less likely to seek help when it is needed. It took me years to admit, even to myself, that my brain was fundamentally different than most. Because I didn’t want to be crazy.
The Vatican post office says it has issued its first Braille stamps to commemorate the 200th anniversary of the birth of Louis Braille, the French creator of the writing and reading system for the blind.
The stamps feature a portrait of Braille and his system’s raised dots that spell out Braille, Vatican City State and the price.
Don’t forget, we’re also doing some guest blogging at Bitch Magazine! Check out meloukhia’s introductory post about disability! (Yes, I do write up recommended reading in advance.)