Wednesday, May 26, 2010

"Small" Blessings

My uncle just got a job two years to the day after he was laid off.  He's been looking for work in our city, living out of state from his very severely cognitively disabled teenager and his blind wife.  Their teenage daughter is homeschooled and has been doing a lot of the caregiving, along with some college student neighbors.  He will work here for a while to earn enough money to move them here. 

May everything begin to turn around for many more families.

My daughter and I are watching a television episode on TLC called "Pregnant and Homeless."  The mother is worried her toddler and baby will be taken away because of their poverty.  The mother has lost fifteen pounds since the beginning of her pregnancy, but they are ineligible for food benefits because the husband stole a car when he was 21 (my daughter said that; later it was said it's because they were homeless).  This is *reality* television.  Right now, this is America for a lot of people.

Friday, May 14, 2010

Target Ad Redux

Here's the Target ad for the Coleman tent I tried to post a copy of a few days ago but had to describe instead.  I like it!

In addition to the manual wheelchair user going camping, she appears to have a husband and a son who's playing ball.  The photo goes beyond tokenism because it gives her a context, a family, and portrays her in a nonstereotyped way.  She is independent or interdependent, not dependent.

Since I can't get it posted at a better resolution, here's the tiny url; I don't know if this will work after this week--I couldn't get it to work before.

Thursday, May 13, 2010

Honesty, Not Kindness

Note: this was written about the several months when I was completely bedbound before I received the wheelchair; we asked people to visit us, but no one would.  Friends of many years dropped away when the going got tough. Day after day of lying in a single spot with almost no contact with the outside world messes with your mind and well being like nothing else, similar to the disorientation people get in ICU.
I know much of this venting here is a repeat of other things I've said, but I just needed to bleed here.   Before my son's concert tonight, someone mentioned how the Caring Committee at the school has helped all the parents with chronic illness or with other needs (one woman's husband died this year).  This help is extensive and people are scheduled at specific times, all very organized.  All except for, yours truly...  So venting here...this is representative of many of our networks, you can apply it to our jobs, our extracurriculars, our (former) church, most family, long-time friends.

Dear Caring Committee:

I am asking for honesty, not kindness: why won't anyone help us?

Here's what went through my head since we begged for company in December and January, since some of you called me directly and asked how you could help but didn't:
People think I'm lazy. People think someone, anyone, has helped out or visited.  They think I'm a hypochondriac or have Munchausen's.  They don't believe that I am ill.  They don't believe I am sometimes seriously ill. They think it's too awkward to talk to a wheelchair user.  They are depressed by being around me.  They avoid me because of gossip about me. They don't like my husband.  They are still angry with me about the tasks I could not accomplish.  They just think I'm a total b*.  They think that I'm more physically capable than I am, that I don't have to do without meals or dehydrate myself.  They don't realize sometimes we are living in squalor (well, not quite, but it is really out of hand at times).  They think we have a pattern down and can handle it.   They just think I'm a complainer.  They think we have bad karma.  They think I haven't helped out enough people. They think an ongoing illness is a deserved punishment and that I'm someone to avoid.  They think I've adjusted to everything and don't need human contact.
And I continued to be bedridden then.  It wasn't over.  I just didn't keep asking, not after being turned down or ignored so many times.

My children have lost most of their friends (they have two each).  My son hasn't received a party invitation in two and a half years and has only been invited to someone's home once.  He's either a terrible kid or I'm a terrible parent, or both.  People in all of our networks dropped us, not just fellow parents.  Our children are having to do a quantity of tasks no child should have to do.  My husband can rarely sit down except at work.  My daughter looked back at me with pain in her eyes tonight when you talked about all that's been done for others, as did my husband.  They're alone.  It's not just me.

But I was suicidal, I wanted to die.  The aloneness, the solitary confinement, was truly killing me.  Where were you?  We were friends.  You've left me behind.  I couldn't cope with the same four walls all day, every day, just me and the computer (when it was working).  I begged for help, for company.  You all let me know that you were going to lunch the next day.  You let me know you were going shopping and to fun nights out.  I didn't complain.  I didn't ask for much.  I didn't ask for meals or maid service or help with housework or laundry, as you've been doing for other moms.  I just asked for a little company.  My house is on your way to and from school, on your way to lunch.

I definitely am not asking for help from other parents now--we'll muddle through, as we have. There's got to be something sadly deficient in my character or our family for people to want to avoid us this much.


This week someone asked me in a pointed way what I had done for Scouts this year.  I said that I had been on bedrest and we need help.  No answer.  What I should have said is that being there at all for my son was extraordinarily difficult for me, that's all I could do, with all the strength I could muster, to attend two events before I got the wheelchair.  I was dying from the pain.  Others complained about the food or the way this or that was handled.  I was grateful to be able to leave home for the first time in months.

One of my friends is going to help with some things when my husband has long days, one person wanted to help recently but got sick herself, my mom helps out as she can. We can get some household help for a while--but at the cost of a van.  I see that slipping away.

Wednesday, May 12, 2010

Wheelchair User Featured in Target Ad

This week I was impressed that in its ad for a camping tent, Target featured an adult wheelchair user as one of the models.  She looks like an active camper.  Unfortunately it's not an accessible tent, but as a manual wheelchair user, she can probably manage.  Some advertisements feature children in wheelchairs in a token way, but it's rare to see an adult in a wheelchair in mainstream publications.

Monday, May 10, 2010

Coming Soon to a Theater Near You...

...closed captioning and visual descriptions at the movies.  Stephen at Planet of the Blind has the scoop.  Personally we use closed captioning at our house a lot, and I will be as pleased as punch to take my cousin to a movie to try this out.  This is a wonderful change that will allow more people to enjoy films with their friends and family.

For readers with visual impairments, I will remove the code required to make comments in a few days--though it's supposedly accessible.  The amount of spam-bot generated comments I've had is untenable and I hope that a week of using the validation code might break the pattern.

Thursday, May 6, 2010

Equal Opportunity Silence and Portraits in Miniature

I am sadly behind on correspondence--to readers, don't worry, our friendship is fine. I've been without a computer for long spans of time the past few weeks, punctuated by long periods of browser crashing and computer crashing. One day it took me 14 hours to read one blog that I wanted to. I hardly know who to catch up with first!

The BADD entries this year are awesome but I haven't replied in comments yet to many of them at all.

I think I have to scale back to do more of what I want to--that means shorter blogs so that I blog at all, shorter emails so that I can connect with people more often as I would like. I'm having cognitive issues as well as physical ones. This idea came from me from knitting something very small and then trying to do something larger--the pattern and texture make me want to keep going, but I can't. So I'm going to try working in miniature for a while and see if I can get more done. Jane Austen did this, Emily Dickinson did this. Adrienne Rich wrote short poems because she said that's all she could hold in her head while her children were playing. Frida painted on small canvases since they were angled just over her in bed. So I'm going to try working small and simple for a bit. Join me if you like.

Saturday, May 1, 2010

Blogging Against Disablism: Some Suggestions for the Medical System

Until we with disabilities are treated well in the medical system, we can expect our civil rights to be limited. How can we expect others to treat us better than the medical system does? We need a true surge of support from the medical community for our personal rights as well as our civil rights; I believe that increasing respect in this environment will lead to increasing respect from others who will observe and learn from the medical community. I list a few suggestions here, which are meant to include insurance companies and assistive personnel, not just physicians. Please feel free to add your own ideas in the comments:

1. Better access to and funding of wheelchairs, with proper seating evaluations. Even those of us who have a proper wheelchair now need to look forward--insurance may not cover your next chair, and you may not be able to afford it. People need wheelchairs for access to their communities and to carry out ADLs long before they're 100% bedridden. Lack of wheelchairs can put people on disability, removing them from the workforce as they approach but are not yet completely bedridden without one. Lack of wheelchairs can lead to medical complications, make people less active, contribute to depression and lower someone's quality of life. Physicians should be better educated about the process too; it's not their fault that they don't know.

2. Acceptance of people who are in wheelchairs and the value of their lives. People adjust to using wheelchairs, so assumptions shouldn't be made about quality of life. Even for the most active person, new pursuits or different ways of achieving them can be found. Office spaces from waiting rooms to exam rooms to hold rooms for surgeries should be fully accessible (doorways too). More height-adjustable tables are needed.

3. Better protection of medical privacy. No blanket consent forms for hospital or surgery admissions that do not allow patients to "opt out" of medical photographs or videos as a condition of admission. It's unacceptable to ask questions in waiting areas or hallways, to dictate medical records in the hallway.

4. Kindness. Patients do not get sick to aggravate you. One set of nurses sent me a sweet card after surgery, while a nurse after another surgery clearly considered my husband and me to be aggravations, though I needed very little. One person at my insurer's call center always treats me with kindness, while another does not--I have to wonder if the latter woman is not unkind to people dealing with very serious prognoses.

5. An understanding that "noncompliant" patients may be noncompliant not from self-destructiveness but from severe financial difficulties, lack of transportation or help with transportation, or an unwillingness to deal with severe adverse effects that create more symptoms than they mitigate.

6. More teaching of medical narratives and medical history in medical schools and through continuing education programs. The medical system can be terribly objectifying. Just as patients may better comply if they understand the reasons for a physician's recommendation, physicians may better undertand patient perspectives if they know their reasons and stories. Many of the best and most compassionate physicians have themselves experienced illness--let's learn from one another.

7. Alternative and complementary medicine must stop treating people with disabilities as failures and regard them as normal. Humans are not machines--disability and illness are part of normal human condition. Safeguards must be put in place to stop unproven remedies and therapies that can have serious side effects; currently alternative medicine takes advantage of people's desperation. And rather than dismiss these modalities, the medical establishment can further fund research on therapies that hold promise and help integrate them into regular medical practice where they do work. Just as physicians now recommend acidophilus to help protect stomachs and cranberry tablets to acidify the urine to reduce infections, they should also incorporate other inexpensive preventatives when this is possible. While pharmaceutical company representatives do a lot of physician education about new antimicrobials, no one will come visiting to recommend acidophilus-cranberry regimens. If your patient can eat coconut macaroons to stop irritable bowel syndrome (as recommended by The People's Pharmacy), then she, her insurance, and her employer all save money and treatment with more serious side effects.

Living with a disability can be truly difficult--and often it's not the disability itself that's the problem so much as the baggage that goes with it. Stressors include dealing with insurance, trying to get adaptive equipment or appropriate transportation, managing accomodations at work or doing without a job, needing more physical or household assistance than is available, not being able to accomplish as much in the same timeframe as before, trying to manage in apartments or homes that are not fully modified, strained family relationships, judgment from others. When disability is new or when chronic illness has just reached the level of disability, it can take a while to adjust and the change can be temporarily overwhelming. Compassion and noncondescension during this process is always appreciated.

The medical system, definitely the physician office, should be emotionally safer than it often is, so that people with disabilities feel more support there and less opposition. While I feel fairly fortunate, I know that others are discredited or denigrated or left untreated for treatable conditions. This is shameful.