Monday, February 15, 2010

Website for Potential PCAs/Household Help

U.S. specific:

If you're looking for a personal attendant/caregiver or even just some help with errands, check out Care.Com. Click on the "special needs" tab for PCA assistance or "care gigs" or "housekeeping" for other kinds of help.

PCA can cost a lot less than maid service, with help more tailored for your specific needs.

I think we're reaching a point that some help may be a necessity rather than a luxury, at least some of the time.

Sunday, February 14, 2010

Valentine's Day: Sex and Disability 2

Valentine's Day Sex and Disability Event hosted at Dave Hingsburger's blog. Feel free to join in the discussion, write a post, or share a link.

Last year I wrote that not only do people with disabilities have sex--a material fact that continues to surprise nondisabled people--but we can do so creatively and with joy. If you haven't read that post, you may want to read it first. What I write about this year is a bit more sobering and not sexy per se but as important.

We disability activists see disability rights as civil rights, as close kin to protesting segregation and sex discrimination. Rosa Parks protested being sent to the back of the bus; disability activists such as Ed Roberts protested being unable to get on the bus or to the bus. When a group of people is exploited, objectified, seen as less, their sexual rights are as sublimated as their rights to employment, voting, and freedom from harassment and violence. We have seen this happen with black women who were raped and yet considered to be unchaste, a young black teen who was murdered for looking at a white woman, with nineteenth-century Western white women and twentieth-century African women subject to genital mutilation, with gay people who have been murdered. These are but a few examples. And when it comes to the sexual rights of disabled people, we're still in the dark.

Here's what I want: a movement from a culture of abuse and denial of our rights to sexual autonomy.

People with disabilities are far more likely to experience sexual abuse than their nondisabled counterparts, by caregivers, aquaintances, and partners. 83% of women with developmental disabilities and 32% of men with developmental disabilities experience sexual assault; 49% of them more than 10 times. Of women with physical disabilities, 40% experience sexual assault (twice that of the general population). These and other interesting statistics can be found from the Wisconsin Coalition Against Sexual Assault). We are subject to assault but not seen as sexual beings who could want and act upon sexual urges on our own. What an irony.

In addition, there is sexual abuse from medical professionals. If you were an abuser, what job would you work in? Perhaps one where you have access to kids who are not supervised and who are very vulnerable, or adults who are very vulnerable. I experienced "minor" sexual abuse as a child by an x-ray technician given responsibility for x-raying every bone in my body, then a similar situation as an adult when I had my first spinal MRI (the technician checked to see if I wore a bra with his hand and then left his hand on my breast, telling me to think of my "boyfriend" during the procedure). And something similar while partially sedated (by a tech or male nurse, not the physician). I can't be the only one, and I imagine worse has happened, even routinely, to some people with disabilities. I don't quite understand the dynamic, whether people who abuse within the profession abuse others as well (equal opportunity abusers) or if they only target people with disabilities or who are medically vulnerable because they see us as less than human. Even while I had to have pregnancy and STD and hepatitis testing following an act of abuse, radiology techs and nurses almost never ask me if I could be pregnant; only very recently am I not able to carry a pregnancy because of an incidental condition probably unrelated to my disability--but many other wheelchair users can experience pregnancy. Thus the medical profession acknowledges our abuse and even participates in it (see Ashley's case) without acknowledging our autonomy: that we can and do have sex is not acknowledged--routine protocols are dropped.

At the same time that PWDs experience more sexual abuse, we are often denied sexual autonomy. Not only can abuse affect people's healthy sexuality, but institutions (hospitals, rehab centers, nursing homes, "schools" for people with developmental disabilities) lack privacy and often have policies that interfere with expressions and acts of sexuality between partners or alone. Caregivers, whether family or paid, can disallow, prevent, or punish sex. People who need help positioning as others can do for themselves may have extreme abstinence forced on them, and those caught in nursing homes or institutions are labeled as sex offenders even as their closed doors are ignored. The system that denies many people less-expensive home caregivers and thus forces even young people away from their homes and into institutions denies people many other rights to basic decision making (when to eat, go to bed, and more significant decisions and preferences we take for granted). Thus if you are in a nursing home in Chicago, you may be sexually abused for years (recent news stories). But have sex on your own, not so much.

Even while people assume we "don't" and look surprised that we have children or use birth control or vibrators, others assume our bodies can be touched, pushed, assaulted, and that we just won't mind. Or they assume in more minor ways that my relationship is over and my lack of a wedding ring signifies anything other than arthritis in the ring finger that I broke, that my husband is as available as if he were single, that he is the one truly suffering most, that I am invisible, that my existence lies outside the boundaries of consent. That my inability to be present signifies something about our relationship rather than my ability to be present.

The reticence of people to acknowledge our sexuality and sexual ability means that when problems do arise, there are few answers. It means that PWDs and people without disabilities may miss out on relationships because of people's wrong assumptions. There is still very little written on sex and disability, and people with disabilities report that their doctors or counselors are not willing to answer questions or give advice, though to many of us impairments in this regard can be distressing and affect our most personal relationships. Solutions may not be found and we may be asked directly or indirectly just to live with pain or abstinence. Right now intractable pain and extremely limited mobility in my hip means that I often cannot have partner sex or solo sex in the ways that I prefer, even with variation. Is there a solution to this? Heavier pain meds that I don't otherwise need given before and after, a minor hip surgery? Surely there are some answers, and it should matter to someone that my lack of hip abduction significantly affects me in a way that others may think insignificant or nonessential.

Nevertheless, it is my body and my problem. Whether or not I have sex should be determined by my body and my brain. I should not have sex forced on me, nor should I be prevented from having it, nor should people dehumanize me by assuming I do or don't engage in or enjoy sex, fantasy, toys, masturbation, sexual media, or discussion of sex. We are more like those with disabilities in this regard than not; people prefer to make a separation and imagine that we are different.

Friday, February 12, 2010

Snow Day!

Record snowfalls=snow day. That just doesn't happen often. Beautiful, like a fairyland.

Grateful for this since it's been a long week. My husband was also gone Sunday for one last interview Monday and I had two sick kids and a major pain flare. Can't wait for the chair (will be before end of March)--that will make caring for myself without help far easier/with less pain--it removes two transfers every time I must go to the restroom (couch or bed-chair-toilet-->the couch is particularly difficult to move from) and means fewer transfers/getting up in general because I won't need to get up so much--or avoid it, as I had to do yesterday. I'll already be in the chair. The kids got everything ready for dinner last night except cooking the meat--my husband has a long commute. I just could not sit up much after overdoing Sunday and Monday.

So very relieved about the approval too--my husband will be doing a fair amount of international travel. I think he'll have good opportunities there and he's very interested in this new work, though we both wish for a higher salary (he's making far less)--if he had got the job he interviewed for on Monday, we'd have been able to hire a caregiver part-time and meet all financial obligations and work toward our future more. He can reapply there in a year, though--this company hires people all the time, and the manager said he was on the fence about him, that his coding just needed to be faster (which it will be again in two to three months, with skills more specific to that sub-field). Not only would the location be beautiful and liberal and artsy, but there would be no medical copays at all, none. No insurance premiums, no copays. Granted, what insurance turns down (seat elevator on wheelchair, for example) we'd have to, but that would be far less than the extraordinary expenses we've had. On this salary, I can't continue on Enbrel because of the extreme co-pay; we just can't afford that and meet our other obligations, including immediate medical needs that arise.

But I don't have to worry about being the most medically expensive--a lot of the people in the company are much older and have recently had double knee replacements and lumbar surgeries. Obviously we all have the responsibility to be responsible, but I think we'll be okay if urgent needs arise. I don't foresee any other surgeries needed soon and my other medicines are cheap--generics.

Just lots of adjustments this week--physical, mental.

Monday, February 8, 2010

Thursday, February 4, 2010

Good News

My husband has a new job and starts next week!!

The insurance is with a company we used several years ago that seems to be a lot better; that will start in a few months. I will probably have to go back to my former rheumatologist, though; very unfortunate since this one is so good. The company, which is very small (about 100) self-pays to save costs--in other words, it's not true insurance but a plan managed by an insurance company. The company pays directly for all medical costs. This makes me nervous since the company will see expenses go up some--though of course other people have babies and surgeries and other costly events. Enbrel is high cost and I have had to have a lot of surgeries and procedures in addition to more regular appointments, diagnostics, and regular labwork to monitor the changes. I always hope the more expensive (and distressing) events are behind me. And I feel paranoid about staying on a high cost drug ($15,000 a year). I don't know if the company/HR knows which employees they are paying out on. I imagine looking costly to people at family events, who will know why they're paying more for insurance; certainly it would be wise to keep my medical information very private or to minimize ("just arthritis!"). One reason that I stay anonymous--for his employability as well as mine if circumstances change.

All of this, of course, feels minor after nearly a year of unemployment and being very close to being out of our home.

In other good news, if I had a kidney stone (or stones), it passed. I was feeling much better during the evening yesterday, though I woke up with a yelp at one point last night, was gasping while lying on the x-ray table, and still have some pain. The IVP, sonogram, and cystoscopy all came back just fine--no other issues. What a reminder to drink lots of fluids! I did have kidney pain and bleeding. It is still possible that Enbrel caused it. We'll just have to be watchful and careful. I am *very* thankful not to have to deal with more procedures to rid myself of stones right before my husband starts a new job and that there is nothing extreme to worry about. I am feeling very relieved after a difficult morning full of procedures. I am back on the Florinef again. Somehow the instruction manual to me was misplaced.

Wednesday, February 3, 2010

Please Help a Friend

...this include my friends who are not disabled.

Most but not all of my readers also read Elizabeth's blog ( Her wife Linda has lost her job and unemployment is there is a tiny fraction of our unemployment, not even $500, with NO food stamps. Elizabeth may also lose insurance by the end of the month, as hers was through Linda's job and she is just now eligible for disability because of this job loss in her family. There is no COBRA as there is in the U.S. (Americans need to become aware of the limitations in universal care in Canada, especially the poorer provinces). They don't have a place to go locally if they can't meet the rent.

On her Amazon wish list, Elizabeth has a list of essential over-the-counter medicines and Gatorade that she must have for her dysautonomia. These will help. Also, if you can get a CANADA Safeway or CANADA Thrifty's gift card. Otherwise, you can also donate to their medical account at the link in the right column at:

I know many of us are so strained financially, but I can honestly tell you what a huge difference $15, $20, $40 or more can make after unemployment for almost a year. It can make the difference between eating or not eating, getting the gas money to go home or worrying if you can get back, getting dishwasher soap, keeping phone and internet for job searches and personal survival for someone who's disabled and at home. The small donations we received meant just as much and always went for immediate needs. If you can donate something else, she'd like a few manga from her wishlist--she's alone a lot, can't concentrate on or see finer text, and this gives her something to do during long hours of the day and during times of intense pain.

Please help out, friends.

Tuesday, February 2, 2010

Hi, Dear Readers

I have an alleged kidney stone and related bleeding/technicolor lab samples that are giving me grief (though it's not comparable to birthing a baby, it just won't budge and I'm very uncomfortable/can't rest easily). I had an early appointment today and have an IVP and a second doctor's appointment later this week. That's after four doctor appointments last week (I *never* want to do that again, tried to change the fourth but couldn't). I was prescribed Florinef for amazingly low blood pressure that had lasted several weeks. Amazingly, the low blood pressure mostly went away by the end of last week. The culprit may be Enbrel and steroids for each of these. Hoping the kidney stone will be just as amazing and do a disappearing act so that I can be blogging away and doing other writing soon.

This, my friends, is why I prefer not to be on a lot of medicines. I just don't react well to them.

However, I should have some good news to announce soon. Hanging in there in the meantime--a wonderful gift box from Elizabeth, Cheryl, and Linda is still bringing me much enjoyment and needed distraction, and I've had two visits from friends recently. These mean so, so much after many lonely weeks.

Eloquence is gone. Coming back to the post, I remember to say the injection into the ischial spine went well and I can sit up more without trying to throw myself backwards to relieve pain. I still can't do it for long and still need the rehab chair with tilt.