Monday, March 12, 2007

HIV/AIDS and Disabilities Blog Carnival

The theme of this issue of the Disability Blog Carnival was HIV/AIDS and disabilities. One thing clear from the submissions I received and other material I found on the net is how much in common people living with disabilities and people living with HIV/AIDS have and yet how distant from each other are the web communities of people with disabilities and people with AIDS. What I have tried to do here is first lay out some of the official sources of information on HIV/AIDS and then to present individual voices of some disability bloggers and AIDS bloggers. I had hoped to be able to write more about the interactions between AIDS and other disabilities. This has not happened but this carnival does point to larger overall similarities and differences between HIV/AIDS and other disabilities.

The official view
In the United States, HIV/AIDS is usually legally defined as a disability (the ACLU , and About.com have useful summaries of cases and issues). There is little information about the relationship between HIV/AIDS and disabilities but the few studies there are such as this one sponsored by the World Bank show disabled people are as or more likely to be HIV+ than their hearing counterparts. Reasons include lack of access to prevention information and appropriate treatments, widespread ignorance about the sexual activities of people with disabilities, abuse of people with disabilities, and in the case of the Deaf community, major linguistic differences between mainstream languages and Deaf people’s native sign languages.

Major government websites like those of the NIH , the CDC, and the HIV Testing site provide useful general information about HIV but little useable information about HIV and disabilities. The HIV Testing site, for example, lists information about American Sign Language on individual pages but there is no way to search for this information from their search pages. The magazine POZ , a general interest monthly that deals with a wide range of HIV/AIDS issues has a few articles of interest to disability studies, including a feature on a feature on a blind HIV+ designer and a classic article on HIV/AIDS and the Deaf community . POZ’s associated directory
provides easier to access information on the limited number of clinics that have special programs for Deaf people,
Blind people, people with physical disabilities or that provide transportation assistance . Suite 101 also provides useful general information.

View from the blogs
The commonalities between people with AIDS and people with other disabilities are clearest in the personal blogs. AIDS blogs include those listed at POZ, Best of the Web, and About.com’s forums. Good places to look for other disability-oriented blogs include Disability Studies, the Gimp Parade, and the Diary of a Goldfish. All these blogs reflect the practical and legal complexities of everyday life. Some posts are on general issues such as Goldfish’s amusing take on paint colors and Rasheen’s thoughts about his father. Many, however, deal directly with the effect of HIV/AIDS or other disabilities.

Tim writes about his struggles with AIDS and AIDS medications
I have been taking care of some of my own needs and not spending any time writing lately, mostly due to some really nasty days dealing with side effects from some of my medications and also because my body is showing signs of fatigue and wearing down.

and about the legal system supporting people with AIDS
congress has now re-authorized the Ryan White Act, but trimmed it down in so many ways that we are still trying to figure out what we have left. Actually, we no longer have Ryan White as it stood previously and in last week’s Statewide Title II meeting, we were told that HRSA is still trying to interpret the new definitions and new guidelines. When we all finally wade through the changes, I think we will find that by our “collective silence” in the halls of congress; we have ended up with very little as compared to what we used to take for granted.

David’s interview with Christine, a 21-year-old college student describes the on-going work she needs to do make sure she gets the services she needs such as personal assistants to help her get in and out of bed in the morning and evening and regular notetakers for her classes. Particularly interesting is her discussion of the challenges of balancing friendships with the roles of service providers.

Sue Bayliss blogs about Spasmodic Dysphonia
Dystonic movements of muscular spasms and tremor may result in significant levels of fatigue and diminished stamina thus making life more difficult to get through the day.

Blogs also document when things have gone right. Wheeled Traveler describes her joy at the unexpected access she had at the recreated 1830s Old Sturbridge Village.

Like the AIDS blogs, Disability blogs also discuss legal issues like this piece on the legal issues surrounding parents advocating for the rights of their autistic child.

Themes that runs through many blogs are questions about labeling, identity, boundaries of self and the language of disability or HIV/AIDS. For example, this piece discusses the legal ramifications of labeling a student as being emotionally disturbed and how these differ from labeling them as having a conduct disorder, these include that students considered emotionally disturbed cannot be suspended from school while those seen as having a conduct disorder can be.

Not only do bureaucratic systems label but so does the general public . Gordon writes
The first thing I am asked, of course, is not about my purpose there or a question about my work but the number one question I, and any other self-respecting disabled person, hates to be asked…

What do you suffer from?

I answered that I mostly suffer from exclusion and from being labelled by my impairment. Unsurprisingly, he looked at me blankly not realising that this is not his darn business! And in fact that it’s not anyone’s business strictly speaking…


Wheelie Catholic tells of similar experiences while shopping
Yesterday a woman approached me in the grocery store while I was shopping. She said "I really think, if I was you, that I would use one of those scooters to shop. Why don't I go with you and we'll get you one?"
Now I can't use a scooter because I don't have the trunk control to sit up in one. Nor can I transfer into one in the first place. I always get a mental picture of myself draped over a grocery scooter cart and someone on the intercom saying "Pickup in aisle three - quadriplegic down."


Bint Alshamsa offers a different perspective, one from a Southern point of view,
if someone saw me eating alone at the local coffeeshop one morning and they started asking me questions about my disability, I wouldn't consider it rude at all. It's just something we do down here. We will hold a conversation about almost anything with a stranger. On the other hand, striking up a conversation with the barista or customer at a northern coffeeshop, just isn't going get the same reaction.

Connected with talking with strangers is the idea of privacy, a repeated theme in AIDS blogs such as Ann’s as well as disability blogs.
We might not choose to share our HIV status with you. Many of us are afraid to share and with good reason. We never, ever know how someone is going to treat us until after we've told them. If a person reacts badly, we have to live with the consequences. We cannot UN-tell.

How to describe AIDS or disabilities is an on-going topic. Lady Bracknell has written what Goldfish calls ““one of the best explanations I've seen blogged about the Social Model of Disability.” Her example about John illustrates this.
Traditional/Medical Model
John can’t get into this building because he’s in a wheelchair.
Social Model
John is a wheelchair user. He’s disabled by the fact that this building doesn’t have a ramp or a lift.


Goldfish also discusses how to explain (or not explain) disabilities by arguing against a Tragedy Model, particularly how thinking about disabilities as tragedy traps people with disabilities.
What’s more, with HIV/AIDS, perhaps more than any other condition, disability often begins long before a person experiences functional impairment. The mere status, regardless of whether it poses any actual limitations, is enough to bring one up against disabling prejudice. Prejudice from both those who consider a person to have brought their condition on themselves, as well as those who may not, but consider HIV/AIDS so very tragic that someone with the disease might as well be on their deathbed from day one.

This discussion brings up two points about how HIV/AIDS differs from other disabilities, first that it is an infectious disease and second that while it is often controllable, AIDS is a deadly disease. These are topics that HIV/AIDS bloggers often address.

Marvelyn writes about the importance of protection against HIV.
As a woman living with HIV, I’ve learned this: at the time that the sexual encounter took place when I contracted HIV, absolutely nothing else was important except me protecting myself. Not his sexual orientation, nor his HIV status. I cannot blame him. I cannot blame my parents, my schools or TV. At the end of the day, I couldn’t blame anybody but myself.

Tim points out how the social and medical aspects of HIV/AIDS are intimately connected.
HIV is only manageable IF there is enough money to supply the medications in an uninterrupted supply, for life. Also it is only manageable if your health and your immune system stay strong and your virus never mutates to an untreatable one.

The reality of the deadly nature of AIDS haunts many of those writing about it. Dave Hingsburger, not usually an AIDS blogger, wrote about his friend Bob.
My best friend, Bob Clayton, worked in the home too. We had so much fun working shifts together and we fell in like with each other quickly. I would always check the shift lists to see if Bob's initials RRC were on the board on the same days that DH were there. I loved those shifts. So did the folks in the house. They liked all the laughter. We stayed friends even though he moved to Vancouver to take up a life there. I visited him regularly and talked frequently on the phone. I saw him slowly dying as AIDS began to claim him.

Even so I was unprepared for his death. Death, even expected, can never be prepared for. It hit me hard. All these years later, I still sometimes remember something that Bob said, something that we all did together, his bad choice in boyfriends, his great taste in decorating - all of it. Then it hits me, almost fresh, Bob's dead.


Even more difficult than facing a friend’s death is the task of facing your own. Jonathan’s blog is searing.
I woke up this evening, from another full night and day of sleeping, of saturating my mattress with sweat and thrashing with fever. And after a while, the fever broke, and the sickness subsided for a moment. And I felt, enough to finally think the thoughts in full, that my time here is coming to a slow close. That my days of walking this path are numbered, and that it’s ok.

Seriously, it’s ok.

….Fall seems to be heading to winter for me. As it’s supposed to. As it does, for everyone and everything we know and love. Whatever else happens, I know I will not be alone, on this side of the river or the next. To say that is a comfort is a gross understatement. I do not think my dreams are lies. I do not think my love is wasted.

I am recording this because people have asked if I am OK. And thing is, yeah, I am. I’m sick. Might be dying. But I am fundamentally ok, if a little wistful and sad sometimes.

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8 Comments:

Blogger Penny L. Richards said...

Thanks Leila! I like the approach you took here--definitely some common interests and experiences across the blogging communities. You've helped make some great connections here.

A heads up that the next Disability Blog Carnival will appear Thursday March 22, when our host Alexander at howtowheelchair.com will feature the theme "independent living." Use the blogcarnival.com submission form, or just email Alexander with your links to recent posts of possible interest.

8:24 AM  
Blogger Penny L. Richards said...

Just a note, Leila--a lot of the links aren't working for me--can you check them from your end?

8:26 AM  
Blogger Leila Monaghan said...

PAH! as we say in ASL, I've checked all the links, done editing, and now think they are all working. Lemme know if any of them go dead again.

thanks Penny!

10:19 AM  
Blogger The Goldfish said...

Well done Leila, this was great. :-)

12:43 PM  
Blogger Ruth said...

thanks- enjoyed reading through this and learning about new blogs -and making connections

4:48 PM  
Blogger Leila Monaghan said...

Thanks guys...it was really interesting working through such a variety of material. It was nice to read both the HIV/AIDS blogs and the more traditional Disability blogs with new eyes.

7:37 PM  
Blogger David said...

Thanks for the carnival! Interesting reading.

5:09 PM  
Blogger HIV+DaveyBoy said...

Meet other HIV POZ for live chat @ www.AIDSchat.org (thousands of members)

8:47 AM  

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