Tag Archives: multiple sclerosis

Recommended Reading for November 23, 2010

miss_invisible at Take a little look… (DW): Origins

I often find myself wondering when, exactly, everything started. Have I always been dealing with mental illness? Have I always been, to greater or lesser degrees, disabled? At times the wondering borders on obsession, the inability of my anxious mind to let things go making me turn the thought over and over in my mind. Maybe part of me thinks that if I knew when it started, if I could find some moment and say, “This is when it began,” then maybe I could master it. I could understand it, I could control it, I could fix it. Ridiculous, obviously, but a lot what goes on in my head has fairly little to do with logic.

Shoshie at Catalytic Reactions: Afraid to Fly (trigger warning)

I particularly worry about flying the day before Thanksgiving.  The flights are so full, the airlines are looking for any excuse to boot people.  And now, there’s the added stress of the body scanners/grope searching.  I don’t want to go through the body scanners.  I don’t want someone to see my naked body.  I’m not ashamed, but I haven’t done anything wrong.  They have no right.

Lene Anderson at The Seated View: Everyday Hero

The click in my mind that connected that to the undertone of amazement that a person with a disability would adapt and go on with their life. It’s as if there’s a sense of awe that someone would face difficulty or pain without being curled up in a corner, gibbering in fear and how this bestows upon the person a regard as being a role model. Because it is apparently inconceivable to the able-bodied that it is possible to have a life while not being able to move your body the way the Abs do. Inconceivable to the point that there is this weird sense that disability conveys an alienness, an otherworldly not quite personhood.

BenefitScroungingScum at The Broken of Britain: Clare’s Story

I’ve been exhausted for as long as I can remember. I remember walking along in a kind of dream state when I was 7 or 8. I never went out anywhere as a teenager, I didn’t have the energy. At 19 I went to Germany to be an au-pair and remember the exhaustion of that. When I returned I went straight to University to study German. In a summer job in a museum in Munich I used to imagine making a den in the coaches that were part of the exhibit. I started to forget words. A nightmare for a linguist. That’s when it got worse. In my year out, I developed an allergy and was prescribed a high dose of antihistamines. I just slept through the rest of that year. The next year I developed a flu that didn’t go away and slept through my final year too.

Shari Roan for the Los Angeles Times: Sensory stimulation could prevent brain damage from stroke

Imagine a safe, inexpensive and drug-free way to prevent the long-term brain damage that often follows a stroke. No such treatment exists, but a new study involving rats suggests it might not take much to prime the brain to repair itself in the immediate aftermath of a stroke. For the rats, the simple act of tickling a whisker was enough to allow the animals to regain full cognitive function after a severe stroke — as long as the treatment was given within two hours.

Harriet Hall at Science-Based Medicine: Chronic pain: A disease in its own right

Herself a victim of chronic pain, [author Melanie Thernstrom] brings a personal perspective to the subject and also includes informative vignettes of doctors and patients she encountered at the many pain clinics she visited in her investigations. She shows that medical treatment of pain is suboptimal because most doctors have not yet incorporated recent scientific discoveries into their thinking, discoveries indicating that chronic pain is a disease in its own right, a state of pathological pain sensitivity.

Dear Imprudence: Interfering in My Friend’s Marriage is My DUTY!

In a recent Carolyn Hax column, a reader wrote in with the following:

Dear Carolyn:

A friend of mine is getting married to a woman who has multiple sclerosis. His family is very upset by this fact (along with a few other issues they have with his bride-to-be). Should something like having a chronic illness even be a consideration when choosing the person to spend the rest of your life with? I wonder if my friend is setting himself up for a very difficult road ahead.

D.C.

Ah, yes, the old concern trolling ‘for the friend’s own good,’ turning to an advice columnist for backup; this letter seems to pretty unambiguously suggest that the family is justified in being ‘upset’ by the friend’s choice of life partner. It’s sort of surprising the letter writer is even consulting Hax, since the opinions in this letter feel very clearly formed, unless this is some sort of devious plan involving casually leaving the paper open to this letter and the expected approving response to say ‘see!’ to the friend.

Unfortunately, these kinds of attitudes are distressingly common. People who marry people with disabilities are told that they are ‘brave’ for marrying their partners and staying with them, and they’re provided with plenty of outs for escaping the relationship; when things get tough, they’re encouraged to abandon their partners ‘because no one would blame you,’ and all problems in the relationship get reduced to the disabilities. And, of course, people preparing to marry people with disabilities are told that they should ‘reconsider’ and ‘think seriously about’ the relationship. The spectre of caregiving is raised to terrify people into thinking ‘oh, right, I don’t actually love this person! Thanks for saving me!’

And Hax’ response illustrated why I love Carolyn Hax:

Of course he is.

And of course a chronic illness should be a serious consideration — your friend would be doing this woman no favors if he didn’t take her prognosis heavily into account — but for many people it’s not a make-or-break consideration.

The way you pose your question, I’m not sure whether the “difficult road” you anticipate is the multiple sclerosis or the disapproving family. Either way, you’re right. However, there are plenty of people who think the toughest road would be the one traveled without the person they love.

Now, it’s not as if illness spins jerks into gold; if your friend’s family has legitimate concerns about the fiancee’s character, then I do hope they’ll spell this out for him.

But if your friend feels, eyes open, that his fiancee is the one he wants at his side, and if his family’s objection is to her illness (with the “few other issues” thrown out there as a fig leaf), then all I can say is, shame on them. Even though I utterly loathe that expression.

People are very fond of judging each other’s marriages. It honestly seems to be a bit of a national pasttime, whether people are judging people for the ceremony, or who is getting married, or changing names (or not changing names), or whether there are children involved, or any number of things. It seems to be generally socially acceptable to meddle in someone’s marriage planning and to make pronouncements about how a marriage is ‘doomed from the start.’ And these comments often come from family. When disabilities are involved, those comments tend to ramp up, and there can be an undertone of extreme ugliness that can be very revealing about social attitudes and the beliefs people feel it’s appropriate to air.

Here, the family has decided they don’t like the fiance, maybe because she has MS, maybe because of something else. The point is that the letterwriter seems to think the MS is sufficient reason to call off the marriage; how could the letterwriter’s friend be expected to marry a woman with MS? They’re in for a ‘hard road’! Everyone knows that people with chronic illnesses shouldn’t get married (and of course that they never marry each other).  The letterwriter seems to be hitting Carolyn Hax up to justify ableist beliefs; to me, it seems clear that the ‘hard road’ referenced isn’t dealing with the family, but, rather, being married to a disabled woman, and Hax didn’t let D.C. off the hook.

I know that at least some of our readers (and contributors) are married or in relationships and encounter these kinds of attitudes about their relationships; how do you counter them? Do you counter them?

Recommended Reading for Friday, 28 May 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Disability rights activists marching in Cork, Ireland. They are carrying signs about cuts and warning that they vote too.

Photo by Flickr user The Workers’ Party of Ireland, Creative Commons license.

CNBC: Panel approves removing “retardation” from laws

A U.S. Senate committee on Wednesday approved a measure to remove the words “mental retardation” and “mentally retarded” from federal labor, health and education laws to help remove what supporters describe as a hurtful label.

The bill, approved by the Senate Health, Education, Labor and Pensions Committee, would replace the terms “mental retardation” and “mentally retarded” with “intellectual disability” and “individual with an intellectual disability.”

Karen Dolan at the Huffington Post: World MS Day-Give Us Jobs or Give Us Wheelchairs

For many years, none of my colleagues knew I had the disease. It is hard to detect unless debilitating symptoms such as loss of mobility occur. A few years ago, I began to use a cane to walk. I began daily injections of a disease-modifying drug called Copaxaone. Last year, my colleagues and friends helped me to buy a WalkAide which my insurance company, CareFirst, refused to cover. Now, I am on a new “miracle drug” Ampyra, that enables me to walk almost as a “normal” person for several hours a day. I am one of the lucky ones.I have a job and health insurance. I am beating MS rather than MS beating me.

Sharon Wachsler at After Gadget: BADD: Q&A on Being an Assistance Dog Partner [Yes, I am still catching up on BADD posts!]

Q: Who trained your service dog (SD)?

A: I did. Yes, me, a disabled person! I train my own dogs!

Q: That was sarcastic and overly emphatic. How come?

A: I get asked this question a lot, and it gets tiresome, especially because usually the question is put to me this way: “Who gave you your service dog?” or “Where did you get her/him from?” or “Who trained him for you?” or “Isn’t it wonderful that they [assistance-dog programs] do this?”

Sharon Weinberger at Nature: Airport security: Intent to deceive?

“No scientific evidence exists to support the detection or inference of future behaviour, including intent,” declares a 2008 report prepared by the JASON defence advisory group. And the TSA had no business deploying SPOT across the nation’s airports “without first validating the scientific basis for identifying suspicious passengers in an airport environment”, stated a two-year review of the programme released on 20 May by the Government Accountability Office (GAO), the investigative arm of the US Congress.

Kai Wright at The Nation: Counting on the Census

But the challenges the Census faces are both greater and more complex than the mechanics of a head count. Families like the DeLeons—young and brown-skinned migrants—are driving rapid demographic changes in the United States. Many of these new residents are uncertain about whether government is a source of support or a threat—the long arm behind immigration raids, detentions and record-high deportations. The answer becomes less clear as the right stokes an increasingly polarized debate over immigration. The tea party’s smears of the government as an intrusive, untrustworthy force are often vocalized simultaneously with the charge that government sold out “real Americans” in favor of “illegal” menaces. In October, Louisiana Senator David Vitter tried adding a question about immigration status on the stripped-down 2010 Census form. He hoped to spark a fight about whether undocumented residents should be enumerated at all. The Congressional Research Service countered that the Constitution clearly dictates that the Census count “persons” living in the United States, not citizens. But the question Vitter sought to force is one the modern Census—with its mandate of rendering a national portrait in hard, tangible numbers—cannot avoid: Who does and does not count?

Ruth at WHEELIE cATHOLIC: Who’s Counting?

I tell them that when I ask a stranger for help, I’m sometimes told “You should bring someone along to help”. My inability to do physical things is seen as an unacceptable burden, a bother to some very vocal people.

This kind of attitude is why we have warehoused people with disabilities in institutions for years, out of sight. It’s as if some in our society are afraid of what would happen in a world where people who need help getting straws out of paper covers were set loose. Do they imagine hordes of us hitting Starbucks at noon, causing havoc by holding up the line and asking “Can you open this for me?”