Tag Archives: social assistance

Recommended Reading for November 25

25 November, 2009recommended readingbbc, chronic illness, chronic pain, chronic pain conditions, comedy, health care is an accessibility issue, health conditions, invisible disabilities, mental health, mental health concerns, mental illness, social assistance, social policyAnna

On Living with Pain and Taking Care of One’s Self

I have been managing my chronic pain and taking care of myself for years. But taking care of myself requires the cooperation of other people, and that can be the most difficult challenge to overcome. I cannot take care of myself or be well if others do not take my pain seriously. Just because I was able to do X yesterday does not mean I can do it today. The pain comes and goes. Once it starts I have to let it take its course. But society caters to people who are able-bodied and physically strong. Illness and pain are not compatible with the typical pace of life, and I admit I have anxiety about falling behind.

Living with an invisible disability can be exhausting – not only because chronic, searing pain is energy-draining (in my case), but because it leaves behind no evidence. Communicating with others about my pain often leaves me feeling misunderstood and isolated. Sometimes I want to wear tops that reveal my scar all the time, in order to silently “prove” there’s a *real* reason I just want to lie down, can’t carry that ten pound box, or don’t want to stay out all night partying. I cannot shake the feeling that other people doubt me or believe I use chronic pain as an excuse to get out of doing certain things.

Insurance Company Revokes Depressed Woman’s benefits over Facebook photos

Mental illness is no exception to this rule: people think they know what it looks like, that they can spot a person with a mental illness a mile away, and that if a person doesn’t live up to those expectations, they’re either seeking benefits they “don’t deserve,” or seeking attention. And with regards to depression specifically (as it’s the topic of the original article, and my greatest knowledge base), they tend to think that if someone isn’t spending all of their time crying, frowning, or refusing to get out of bed, they can’t possibly have it.

Your Scooter Means You’re Poor

I have learned that differently abled means poor to many. It means that you are not working. It means that you have no identity or interests. I understand for many being differently abled means poverty because we live in a world that does easily make the accommodations that are necessary to participate in paid work. Knowing that this is the case, why does the stigma attach itself so ferociously? If a person is unable to work because of a lack of accessibility, why do we feel the need to persecute them because of the way our society is designed?

When I tell people that I write, the answer is usually that it makes sense. It does not occur to anyone that I chose this because of a love of writing and sharing ideas. Writing is something that I was interested in from the time that I was a small child. Because I am doing it, it certainly is not real work. Such ideas do not attach themselves to a friend of mine, who makes his living freelancing in this area. Sitting together, people will invariably ask him a multitude of questions, ignoring me completely. It is understood that he chose his work out of love and not convenience.

A Different Kind of Test

More than two dozen seniors at Lincoln University, in Oxford, Pa., are in danger of not being able to graduate this spring — not because they’re under disciplinary probation or haven’t fulfilled the requirements of their majors, but because they were obese as freshmen.

…

It might sound like a joke, or a violation of individual rights, but James L. DeBoy, chair of Lincoln’s health, physical education and recreation department, said he sees it as his “professional responsibility to be honest and tell students they’re not healthy.”

In the news:

Disability turns laughing matter in Channel 4 comedy show [Headline is really misleading past the first few paragraphs of the article] [Also, oh gosh! People with disabilities don’t all agree on everything! I love that they spelled that out in the article, but it always bothers me that this is considered news.]

Penned by writers from Skins and The Thick of It, the series features six disabled characters marooned on an island, including a blind man, a woman with cherubism and a paraplegic man. Each character is played by a disabled actor with the same disability, and one complains about the number of non-disabled actors portraying disabled people.
…

Liz Sayce, chief executive of the Royal Association of Disability Rights (Radar), says: “There is likely to be a storm of comment from disabled people and non-disabled people alike over Cast Offs. Some disabled people will find it funny and real – portraying disabled people as adults who swear, drink and have sex. A real break from covering disability with kid gloves, or not covering it at all. Others may well find it offensive.”

Power and Responsibility

13 November, 2009bodies, feminism, shaming, social attitudescaregiving, family, family dynamics, feminism, health care is an accessibility issue, homecare, power, power dynamics, rethinking social norms, second shift, social assistanceAnna

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 October 30

30 October, 2009recommended readingabuse, asperger syndrome, autism, canada, family, family dynamics, media and pop culture, mental health, mental illness, murder, poverty, sex, sexuality, social assistanceAnna

#Antidev: Some thoughts on disability “devotees”

The issue of disability devotees — and let’s call a spade a spade here: they’re fetishists — divides the disability community at every level, from academia to, well, Facebook. It’s something women with visible disabilities encounter regularly. And I believe that, while the extremists are relatively rare, the growing acceptance of “devotees” online will trickle down into the broader social constructs around disability.

It’s widely believed that people with disabilities are viewed (in contemporary Western culture, at least) as “asexual.” The truth is more complex. We certainly do not fit the airbrushed-cover-of-Vogue ideal of beauty that is shoved down our throats. But then again, neither do all but a few supermodels on the planet; we don’t consider 99.99% of women as asexual, though. So here’s a key point: differentiating beauty (or physical attractiveness) from sexuality. To be sure, sex can be different and require a bit of creativity and patience, but most women with physical disabilities (at least, the ones I know!) have pretty normal sex lives. Nevertheless, because we can fall so far outside the norm of what is considered attractive, we (like all women) tend to conflate general beauty with sexual attractiveness, making us easy targets for people calling themselves “disability devotees” — sexual fetishists who objectify women with disabilities and reduce them to the sum of their (disabled) parts. Many women with disabilities entertain such advances, or even encourage them; when you’ve lived in a society rife with ableism it can be easy to believe that your disability defines you (and as a woman, that your sexuality defines you), and fetishists play right into that mindset.

Personal Situation

Now that I know all these things about my father I can‘t stop thinking about it (especially the new info in addition to the terrible tirade from him the day before). I don’t want to live with him anymore, but I don’t really have any other options. I need constant care and there’s no one else in my family who is able to take care of me. I know everyone says this, but he truly does love me and wouldn’t be able to take care of me like this if he didn’t. Out of everyone in my life he’s given above and beyond anyone else when it comes to my caretaking – he’s here full time and any one else is less than once a month. But I can’t stand to be around him anymore. I have so much anger. I’m angry how he treated my mother, and indirectly caused her to hurt me. But I’m angry at my mother for directly hurting me. I’m angry at my father for having such an anger problem that we had to be afraid of it. I wish I was healthy so I could just move away, but my disability is so severe that I really can’t do anything for myself and need the constant care. I don’t want to go to some nursing home – I’ve heard too many stories about that to trust it.

One time in the past when he exploded emotionally, I called a nearby shelter because it was having such an emotional impact on me. I told them about my physical situation and they said that they were not handicap accessible and referred me to another shelter. Neither shelter would be able to care for me in the way that I need it. I just don’t want to be alone in this world – it‘s not just emotional, I need a someone to physically protect me because I am that fragile. It sucks that my family sucks, but they’re all I’ve got right now and they’ve helped me in a lot of other ways.

In the news:

Via email from Ira G.: Minds Interrupted: Stories of Lives Affected by Mental Illness:

The three will be among eight Baltimoreans who will discuss the ways in which mental illness has wreaked havoc with their lives in a program called “Minds Interrupted.”

Participants wrote and edited their intimate, sometimes funny, often harrowing tales at a recent workshop that included tips on performance skills. Tickets will be sold to the show, which is being held at Center Stage, and which was modeled on the popular Stoop Storytelling series in which nonactors tell seven-minute-long anecdotes about their own lives.

The hybrid nature of “Minds Interrupted” can be perplexing: Is the evening a high-minded attempt to publicize a vexing and misunderstood social problem, or is it entertainment? And can the two categories successfully be mixed?

Five benchmarks for social assistance [Canada]

The next bold move the government must make is to stick to its guns on a comprehensive review of Ontario’s broken social assistance system.

The commitment to review Ontario Works and the Ontario Disability Support Program – made in the province’s poverty reduction strategy last December – has been agonizingly slow to get off the ground.

With the first anniversary of the strategy quickly approaching, more and more Ontarians are being forced to deplete their savings and join Ontario’s swelling welfare rolls.

As the province moves to more effectively employ resources to meet people’s needs and promote economic recovery, we can no longer afford to wait.

Student beaten to death in his Sac State Dorm Room

Scott Hawkins had Asperger syndrome, a form of autism, “that made him very obsessive about his favorite things,” his father said. He especially enjoyed studying ancient European and Middle Eastern history and was hoping he could graduate with a minor in one of those areas, his father said.

“He could go on and on about the history of Rome or the reasons that the Greek empire did this or that,” Gerald Hawkins said.

The attack was reported just before 2:30 p.m. Wednesday when one of the dorm’s resident assistants called police after hearing a loud disturbance coming from one of the suites.