Tag Archives: caregiving

Recommended Reading for Wednesday, November 10

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.

On Centring Caregivers in Disability Discourse

It’s really off-putting when a group of disabled people are trying to have a conversation and a caregiver butts in with “you’re wrong. I know, because I care for someone with such and such a disability”. This makes me squirm. Even worse are those disability organisations or charities that have only parents and caregivers on their boards. “Oh, but it’s all right, my brother has this condition. In fact, we all have family members with this condition!”

It’s troubling enough that there are so many such organisations out there that just don’t have anyone who actually has the disability concerned on their boards – it’s as though we can’t speak for ourselves or have unique experiences people who don’t have our disabilities can’t relate to or advocate about! – but that’s not directly what I want to talk about today. I want to talk about who gets to run conversations about disability and who gets to run the narratives. All too frequently, abled caregivers and family members are centered in conversations that really ought to be run by and focus on disabled people.

The thing is, abled caregivers and family members, while pretty involved in the lives of those they are caring for, have their own perspectives, which is great. But treating those perspectives like substitutes for those of disabled people themselves makes me really uneasy. So when the perspectives of disabled people get pushed out because carers are brought to the forefront – in legislating, in daily conversation, in interviews – for me, that’s a clear example of ableism run rampant. Because it seems like those in charge think that disabled people aren’t worth listening to or are incapable of informing their own opinions.  The dominant narrative is that abled people are better worth listening to, and I get sad when abled carers and parents just don’t seem to realise that they’re dominating conversations at the expense of disabled people. (It reminds me of those times when men start talking loudly about feminism and everyone else in the room has to keep quiet, is denied a chance to speak.) And “advocacy” of disabled people shouldn’t be at the expense of disabled people.

Of course, it’s usually particular kinds of caregivers who get centred – who centre themselves – in these conversations: abled ones. As ever, it is those with multiple roles who are pushed to the margins, because their existence is held to be just too complicated to deal with. I think acknowledging disabled people who are also caregivers would be a really good start to decentralising the place of abled caregivers in these conversations. Moreover, acknowledging the multifaceted nature of experience brings out the nuance: we really have to engage with the dynamics of different people’s situations here – what are the power dynamics like when you’re both in a position of power and disabled? how do these conversations apply to you? – rather than defaulting to listening to abled parents and caregivers.

Now, I’m not saying that abled caregivers and such should have no place in conversations about disability and ableism, you understand: I’m saying that such folk have dominated conversations about these matters. There is a place, it just shouldn’t be a place that replicates the hierarchies present in society already: hierarchies around who gets to speak, who gets to do the representing. The effect of this – and you can look at a range of newspaper articles or documentaries or whatever you please – is that disabled people get silenced. The effect is that, more often than not, it becomes all about portraying the caregiver as angelic and the person cared for as a burden they have kindly taken on.

And that’s not on.

[Cross-posted at Zero at the Bone and Feministe]

Who Is The Victim Here?

Content warning: This post contains discussions of physical abuse and sexual assault perpetrated by caregivers.

Last week, I read a horrific story in the Los Angeles Times about an employee of a retirement home who was sentenced to life in prison for torturing the residents. The story in the Times describes patients as ‘dementia ridden’ and ‘wheelchair bound,’ dehumanising them for readers and putting the focus squarely on friends and family. It’s not awful that this man kicked patients, punched them in the stomach, body slammed them, sexually assaulted them. It’s awful that he got caught and that their families know. The defense? That the accusations came from employees who ‘committed similar abuse themselves.’

This man was named ’employee of the month.’ A medical examiner described the injuries to the body of one of his victims as like ‘being hit by a train.’

“Society is judged by how we care for people who can’t care for themselves,” Herscovitz said. “What could be worse than to have someone abused and not be able to communicate, to be trapped in their own body… and endure the abuse?” (source)

Again, the focus here is not on what happened to the victims, but what the abuse says about society and the perpetrator and the families of the victims. On the guilt experienced by family members who placed their loved ones in the facility. I see a parallel between the language used in these articles and the rhetoric from animal rights organisations like The Fund For Animals, which ‘speaks for those who can’t.’ It’s a pretty stark example of how people with disabilities are viewed by society.

This is not the only report of a ‘caregiver’ abusing people that has showed up in the news lately. In Santa Barbara, a man who sexually assaulted a disabled woman recently reached a plea bargain. Another graphic rape case from El Monte, California. In Des Moines, a disabled woman was raped by a ‘caregiver’ and her rape resulted in a pregnancy; the case would have gone undiscovered if it were not for that.

There is a consistent theme in the way that stories like this are reported. I wrote recently about how rapes of disabled women are framed as a crime against society, not the victim, and the same holds true for abuse. I get the impression, from the way that these articles are written, that the problem isn’t that human beings were tortured, sexually assaulted, and abused, but that ‘the helpless’ were subjected to cruelty and this reflects poorly on society.

It reflects poorly on society that we consider people with disabilities to be helpless. It reflects poorly on society that these narratives reinforce the idea that people with disabilities are incapable of protecting themselves and cannot report crimes committed against them, because this tells people who commit crimes like this that as long as they don’t get caught, they can act with impunity. The dehumanisation of these victims focuses on how awful it must be for their family members, how terrible it must be for them. Not on how awful it is to be a victim of violence.

Sometimes, I read stories where it seems to be implied that the victim doesn’t really understand, so the real source of heartbreak and tragedy is the knowledge of the family members. Never do these stories mention cases where people are not provided with the tools to communicate what is happening to them. Never do these stories talk about situations when people have reported abuse and have been ignored. Surely both of these things reflect poorly on society, don’t they? Why aren’t we talking about them?

These stories do not explore the structural problems involved. They do not talk, for example, about what it is like to be dependent financially and physically on someone who  is abusive. On what it is like to know that reporting could end in retribution, institutionalisation, or even a return to the abusive caregiver. They don’t talk about the creation of enforced dependence, or why it is so hard to report abuse. Why it is that inmates of institutions can report abuse and nothing happens, but when their family members get involved, sometimes action is taken.

These stories are also presented in a way that suggests these cases are unusual. They are abhorrent, but they are not unusual. I wish that they were unusual, that caregivers who abuse were so extraordinary that such stories were blazoned across the major networks on the evening news. Unfortunately, this is not the case. Indeed, a quick perusal of Google News turned up a stack of cases from the last week documenting abuse perpetrated by caregivers. Some of these cases were so awful that I couldn’t bring myself to link to them, even with a warning.

People wonder why people with disabilities don’t universally trust caregivers, have concerns about institutionalisation, why sites like this one that centre the voices and experiences of people with disabilities exist. It’s because these kinds of cases are far from being uncommon, and because in most places, the myth that facilities that warehouse people with disabilities provide ‘care’ is alive and well.

As long as these stories keep being reported like they are unusual, as long as they keep dehumanising victims, the social attitudes that contribute to the abuse of people with disabilities will continue.

Dear Imprudence: Can I Stick My Aging Parent In A Nursing Home Yet?

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.

Power and Responsibility

An earlier version of this post was published in July, 2009.

When I mention that Don has a homecare worker, and explain what that job is, I often get this question:

“Why don’t you do all that stuff for him?”

This touches on something that I’ve referred to a few times, and that’s the idea that it’s totally okay (admirable, even!) that services for people with disabilities be offered by volunteers. It gets into a lot of complicated stuff.

For example, Don’s homecare worker does things like makes sure he is clean-shaven once a week, washes his hair carefully, and does some of the stuff he needs done for his back, which suffers from a lot of sitting/lying related issues, like heat rashes and sores. She’s there for about an hour or so.

What she does for Don is a huge deal in terms of his personal hygiene. All those little things that allow him to be “acceptable” to our neighbours take energy, such as having clean hair and a neatly trimmed beard. Before homecare, Don would often go weeks, if not months, without a proper shave, and look very scruffy and unkempt. But it would be a decision for him – does he shave today, or does he make a meal? There wasn’t enough energy or concentration to do both.

The question of why I don’t do these things has a few assumptions under it. First, it implies that, because I’m his spouse, I should be in the caretaker role. I should be making sure all his personal hygiene needs are taken care of. There’s a power imbalance there that makes me uncomfortable. It puts me in role as adult, and Don in role of child, and this is just not acceptable.

The other thing is part of why this volunteer thing bothers me. Don’s personal level of comfort should not depend on my energy levels. It shouldn’t depend on my mood. It shouldn’t depend on whether or not I’m angry at him today, or I’m too busy, or if I’m home.

Right now, it depends on whether the woman who is paid to come to our home and do these things shows up. If she calls in sick, there is someone else who will come in. I know she has a degree in nursing, focusing on homecare for people with disabilities. I know she’s a professional, who has been taught the issues around disability and privacy, around personal autonomy, and around sexuality and disability. I know the process we will go through if either she or Don does something sexually inappropriate. I know the appeals process if she threatens him or he threatens her. I know what will happen to Don’s care in those situations. More importantly, Don knows what will happen in those situations. He has personal autonomy.

Don’s health needs shouldn’t be dependent on me in any way, because that’s not safe for Don.

In my experience, Feminism tends to have discussions about caregiving focusing around the fact that caregiving roles fall predominately on women, and lead to things like “the second shift”, or caregiver fatigue, or even directly impact women’s abilities in the workplace. (“I can’t work late because I need to get home now.”) I think this is an important thing to discuss, but I don’t think it’s the only part of the caregiving equation. I think we, as feminists, need to also talk about the power inbalance that comes in when one is a caregiver for a spouse or parent that has a disability.

As well, we rarely talk about what happens when the role of caregiver falls on women with disabilities? What happens to that allotment of spoons then? What view do we have of women with disabilities if their children aren’t “properly” cared for? If some other loved one isn’t getting everything they need? What happens to the caregiver/second shift issues then?

I think feminist discussions about caregiving and responsibility need to broaden out to include these complicated issues.

Recommended Reading for November 12

Private Practice Takes a Bold Stance against Decent Behaviour

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).

18th Down Under Feminist Carnival

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.

Denmark Strips Away Right To Privacy from Blind Voters

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.

On being “Crazy”

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.

In the news:
Vatican post office issues stamps with raised dots to honour inventor of Braille system

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.)