Tag Archives: family

Recommended Reading for December 3

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Disableism Impacts Families

This choice that is being forced upon me is impossible. I must either tolerate physical pain at the hockey arena or emotional abuse at the dojo, if I want to be a part of my child’s life. It’s ironic that disabled mothers are often viewed as incompetent but where is the discourse surrounding the ways in which our parenting often occurs under extremely difficult situations? I suppose, of all the people on the planet that Destruction and his brother Mayhem provide the best reason for me to want to rise above, but the constant pain requires more of a super human effort than I believe that I am capable of.

Murphy’s Law And Disability: The Week From Hell

Normally, we get by. We get by pretty well. Provided we stick with the diet restrictions, usually we just switch off when one is a bit more able to get things done than the other. Chores basically go to whomever is in less pain at the time, or in less of a bad mental state or who can actually do them reliably without issue (like me defocusing and being unable to even read a recipe because I can’t keep on it). Usually even when the chronic shit we deal with is flaring the other one is just dealing with the baseline of the chronic shit for them, and the other disabilities coming up are all spread out over time.

Not this week though.

This week was the perfect storm of flare ups, semi chronic appearances and stress induced aggravations of all of the various things we deal with on a regular basis. While my partner fought off a pain flare, struggling just to walk, I was nailed with a “Richter 7? migraine.

Accessibility and Gaming: Randomizers

Most traditional six-sided dice may be tactile enough that someone who can’t see could feel the result. There are also special “Braille dice” available for not that much more than premium gaming dice; they’re more properly called tactile dice since the faces are traditional die pips and not true Braille numbers.

So, blind players can probably get their hands on accessible d6s, but to the best of my knowledge there are no tactile dice made for any other types of dice. Champions, anyone?

The wrong message – still

I don’t know who dreamed up the concept of “disability simulations” but they have been around for a mighty long time. My lifelong friend, Michael A. Winter, now the Director of Civil Rights for the U.S. Department of Transportation, first exposed me to the shameful practice. Michael and I were classmates at a segregated school for crips and met in 6th grade. We attended the same university. As undergrads, Michael formed a group called Wheelchair Action. When the Rehabilitation Institute at Southern Illinois University sponsored a disability simulation, Michael and members of his group stormed into the classroom and tried in vain to halt the fiasco.

Professionals who are nondisabled rarely stop to listen to the people who live with disabilities. I was proud of Michael for trying to get people to understand how destructive these simulations can be.

What Makes A Good Doctor?

Dean Tom Marrie is interested in hearing what kinds of qualities people value most in their family physician or specialist. What do you appreciate about your doctor? What do you think physicians of the future will need that might not be taught at med school today?

Power and Responsibility

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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 11

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Rough Road for military families with special needs

As the wars in Afghanistan and Iraq rage on, repeated deployments are taking a toll on military families.

Service members are prepared for the dangers that lie ahead, but spouses and children are often left to navigate the emotional and physical challenges that come with separation alone. Those challenges are compounded when a parent has a child with special needs.

Equine-Assisted Psychotherapy for Veterans

What is the Veterans Multi-Purpose Center’s Equine Assisted Therapy Program? Equine assisted psychotherapy is an emerging form of therapeutic intervention in which horses are used as tools for clients to gain self-understanding and emotional growth. Equine assisted psychotherapy is a type of animal assisted therapy, a field of mental health that recognizes the bond between animals and humans and the potential for emotional healing that can occur when a relationship is formed between the two species.

Disabled veterans’ families feel strain on finances, health: survey

People who care for Canada’s disabled veterans often face overwhelming demands and financial pressures, according to a study prepared for Veterans Canada.

The study by the University of Alberta’s human ecology department indicates the families of Canadian soldiers released from active duty with severe disabilities suffer long-term financial burdens, as well as high rate of emotional stress and health issues.

New Site for Veteran Benefits [US]

A new veterans information site, Today’s G.I. Bill, has been launched this week by the Lumina Foundation. The site aims to put all of the information about access, eligibility, and benefits for veterans all in one place. The Lumina foundation funds a lot of higher-education access information endeavors, and this seems to be its latest project.

The site could be useful for veterans seeking to understand their benefits, but much of the site links to other tools (the housing stipend section links to the Department of Defense’s Basic Allowance for Housing tool and the section addressing the Yellow Ribbon Program, which outlines private institutions that provide a benefit for veterans, links to the Department of Veterans Affairs’ list of participating institutions). Increasing information for veterans will help ensure they have access to the benefits expanded by the Post-9/11 G.I. Bill update that went into effect earlier this year.

Group uses fly fishing as therapy for veterans

Teach a wounded veteran to fish, and you’ll help him heal.

That’s what the creators of Project Healing Waters Fly Fishing, Inc., believe. The organization, which offers expense-paid fishing trips for military veterans who have a service-connected disability or have earned a Purple Heart, began its first chapter in Onslow County this month.

For the veterans involved, casting a line is the last part of the journey.

Recommended Reading for October 30

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#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.

Guest Post: Negotiating Disableism

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This is a guest from from Renee of Womanist Musings.

Disableism is very new to me. My chronic illnesses not only changed my status, but forced me to see just how pervasive ableism is. It has been a huge learning process, as I have sought to reduce the ways in which my language and behaviour support ableism. I have a physical disability which has caused me to more aware of the ways in which society is structured to benefit those that are able bodied, but it has not helped me to understand the ways in which those that are neurologically atypical face discrimination. Common phrases that I used to utter like bat shit crazy, must be erased from my vocabulary. I have struggled not to say that someone is blind to something, rather that pointing out that they are unable to see or understand.

What I have learned is that ridding oneself of disableism, is a process that is not easy but so very necessary. Each time I am reduced by the assumption of another, it causes me to examine the ways in which my language or behaviour support this. It took time to understand that though I am disabled, I still exist with privilege in certain areas. I can hear, I can see, I can get up and walk if I have to, I have all of my limbs, and people do not dismiss what I am saying because they deem me non-sensical due to being neurologically atypical. As long as they are not referring to my specific disability, many are quite comfortable displaying their disabliesm, as though it does not effect me.

I have sat and listened to the complaints regarding the accommodations that those who are disabled must have to participate in society. While most will not scream and carry on about a ramp, even a small thing, like getting more time to hand in a paper at school, is enough to cause a rant about favouritism and unfair standards. Disableism occurs when people feel as though they cannot take advantage of their able bodied privileges. It occurs when people resist that a task can be completed differently to allow a greater participation.

This weekend, on the way to Destructions hockey game, I ran into an old friend. She had not seen me since I contracted my illnesses but her first comment was that she had to get herself a scooter. To her it seemed a cool toy, while to me it is a reflection of all the things I cannot do. There is a man in my neighbourhood who uses a manual wheelchair and he has commented on more than one occasion, that he wished he had a motorized scooter to get around in. Though I am hurt by the ableist comments of a former friend, my class privilege is part of what allowed that pain. When I needed a scooter to facilitate my activities, we were able to afford one.

Though I am differently abled, I am barely at the 101 level. I went through anger, denial and finally acceptance but negotiating this life is something I must begin again like a newborn babe. I have isolated myself because I viewed my body as the great betrayer, refusing to see the ways in which I could and can still participate. When someone is racist against me, it is easy to find my voice because this is something that I have lived with all of my life, whereas; disableism, even when clearly directed at me, brings about silence and sense of shame. For now I count on the unhusband to speak when I cannot and this again is a marker of how blessed I really am. Even in times of weakness and sorrow, I can count on my family to do the heavy lifting. When I need comfort, each one of them is quick to run to my aid. They may not understand what I am feeling but my pain is enough for them to intervene or try to comfort.

I have learned that disableism cannot be reduced to a simple Black/White binary. Even as I struggle against it, I perpetuate it. Just as we understand that society is inherently racist, classist, or sexist, it is also highly ableist. If this were not an absolute truth, the various barriers that block or limit participation would not exist. My task is to now unlearn that which I have accepted as truth. For me it becomes difficult when I begin to look beyond the limited experiences I have had as a differently abled person. There are issues of race, class, gender and even differing abilities to contend with. This task would not be so difficult today, had I made a conscious decision to acknowledge my various privileges in the past. I allowed my privilege to dictate what I learned and studied, thereby reinforcing the very hierarchies that I claimed to struggle against. Today I understand is that there is no universal experience and it is this very rainbow of difference that I must commit myself to embracing.

Television: Bloody Torchwood

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This post is part of a series about representations of disability in movies, television shows, and books. They contain spoilers.

[Originally published as part of Blog Against Disablism Day, May 2009]

Blogging Against Disablism Day, May 1st 2009If you haven’t seen Torchwood, I’m not entirely sure how to describe it. It’s a Doctor Who spinoff where Captain Jack Harkness and his band of misfits battle to keep the Earth safe from aliens arriving in Cardiff, Wales. There is a Rift in Time and Space that is the Plot Device when needed – aliens pop out of it and, sometimes, people get sucked into it.

It’s also a show where sex and flirtation are part of the plot. Episodes have revolved entirely around sex, such as the one with “sex pollen”, but sexuality, flirtations, and explicit sexual relationships – both same sex and opposite sex – have all been main or side plots. One throw-away line that’s often quoted ’round the fandom is recurring guest star (and ex-lover of Jack’s) Captain John Hart’s comments about how attractive he finds a poodle.

But of course no one in Torchwood would ever flirt with someone with a disability. They’ve never had the chance – no one with a visible disability has ever been on the show.

Oh wait! I tell a lie! Of course someone who has a disability and is deformed has been on the show! I totally forgot. Let me tell you about it.

In Adrift, an episode in late Season 2, Gwen Cooper realises that several people have gone missing in Cardiff, and slowly starts to piece together that they’ve been “taken by the Rift”. The episode focuses on the story of one mother, Nikki Bevan, whose son had gone missing seven months earlier. It shows her grief, and her obsession with finding out what happened to her son. She’s loving and emotionally invested in the search, in contrast to the growing hardness of viewer-standin Gwen.

I’ll skip a lot of summary, which you can read at Wikipedia should you wish.
Continue reading Television: Bloody Torchwood →

Television & Disability: Joan of Arcadia

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This post is part of a series about representations of disability in movies, television shows, and books. They contain spoilers.

[Originally Published in April 2009]

Don and I started watching Joan of Arcadia this week.

Basically, it’s a story about a teen, Joan, who starts to get missions and messages from God, for some mysterious purpose. She’s the middle child of three, with a younger brother, Luke, who is very smart and ignored by his parents, and an older brother, Kevin. Kevin was the golden child, destined to go to uni on a baseball scholarship, before a car accident left him paraplegic 18 months before the show’s start.

Unlike every other show we’ve rented and mainlined, we’re watching this show very slowly because the family dynamics around Kevin’s disability ring painfully true to life.
Continue reading Television & Disability: Joan of Arcadia →