Image via American Women Veterans on Facebook. Caption reads:

Sgt. Lynn Kinney, Maj. Megan McClung and Staff Sgt. Amy Forsythe stand together on Camp Fallujah, Iraq, April 2006. All worked together at the Public Affairs Office for the 1st Marine Expeditionary Force serving in Al Anbar Provice. McClung was killed in action Dec 6, 2006 by an IED while escorting media in Ramadi, Iraq. Kinney, still in the Marines, works as a marketing and public affairs representative for the recruiting district in Pittsburgh, PA. Forsythe is in the US Marine reserves and works for a local TV station in Oceanside, CA.

Happy Memorial Day to all our veterans!

  • Share/Bookmark

If you do the Twitter thing, you are probably familiar with the #followfriday (or #ff) phenomenon, where you recommend other people on Twitter to “follow”. This is a lot like recommending friends “you may know” on Facebook. The social media guide Mashable.com explains more:

#followfriday is a game in which people suggest who to follow on Twitter. It helps everyone find interesting Twitter users. You list the users you recommend following and add “#followfriday” anywhere in the Tweet so others can find it. The “#” is very important – don’t forget it!

This week, I recommended several self-identified women with disabilities for #followfriday. You can see my selections here and here.

In addition to recommending women to follow on Twitter, I’m going to start highlighting women who blog about their disabilities with a little link love. Let’s get started!

Beyond Passing Time: Wimpy Tries to Live with it

To begin with, I didn’t even know my heart was chronically fast — sometimes dangerously — when I was diagnosed with this problem six years ago. In grade eleven and twelve, doctors had noted that it was fast a couple of times, but it was written off as a side effect of extra Ventolin inhaler puffs before a pulmonary function test and another time, as part of a fever when I was in the hospital. I just assumed my heart was just a bit touchy — that’s all.

Brilliant Mind Broken Body: The late night breaks are the hardest

I don’t want my hands covered in silver braces that people will stare at and ask about. Bad enough that they feel no shame about asking me why I need a mobility aid – whether it’s my service dog or, in the past, crutches and canes. But to have them querying me about a set of braces that will ruin the slim, clean lines of my hands is particularly hard.

Life, Paralyzed: Slacker

Most recently, I’ve been getting a throbbing pain all through my back, especially in my lower back. It’s all very odd and frustrating, because I can’t feel the exterior; I only feel the interior. Could I really be feeling my bones and muscles? I doubt it. Regardless, I’ve had all kinds of tests done in hopes of finding a cause and haven’t had any luck. All my major organs are fine. My breathing is good and my blood work is fine. That leaves me with, “it could be stress or neurological pain.” Great.

That’s it for this week. Have a great weekend, y’all!

  • Share/Bookmark

A lot of blogs do a little segment called Thank You Thursday so I thought I’d try it out, especially as today is a particularly poignant anniversary for me.

On May 27, 1995, Christopher Reeve was paralyzed as the result of a riding accident and he became a ventilator-dependent quadriplegic. Reeve used his money and fame to start the Reeve Foundation, which is dedicated to “curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.” I don’t know a lot about Christopher Reeve, except that he played Superman and that after his accident, he became the face of spinal cord injury. He showed the world that even if you were a quadriplegic, you still had a brain, you still had a heart, you were still a person and you could still change the world. From what I can tell, his foundation blew the field of spinal cord research wide open and was one of the most vocal proponents of stem cell research (along with Michael J. Fox) during the Bush years.

If Christopher Reeve hadn’t been injured, I am not sure I would be here today. When I became a quadriplegic, my doctors loaded me up with steroids for months. Eventually, the lesions and swelling on my brain stem came down and with the help of the best therapists ever and an unbelievably huge amount of work, I started to get almost all of my mobility back. I don’t know if those therapies were available before the Reeve Foundation started funding research, but I do know Christopher Reeve created an atmosphere of hope for people with spinal cord injuries and paralysis.

I was given the steroid regimen because even though my case looked dismal and there was almost no chance I would regain any mobility whatsoever, it was worth a shot. I was sent to the best spinal cord rehabilitation unit in the state, and possibly the Midwest, because my doctors and insurance company understood how crucial the best physical and occupational therapy was rather than send me to a “long-term care facility”, otherwise known as a nursing home. Even if I had never moved a muscle again, these were the people would try to coax any life out of my damaged nervous system and teach me how to live as a person with a disability. My therapists never gave up on me and I did regain most of my mobility and begin to learn how to care for myself again.

The likelihood is that had I been sent to this particular spinal cord rehabilitation unit (at Froedtert Hospital in Milwaukee, WI), I would have had this experience no matter what. However, had there not been Christopher Reeve and the Reeve Foundation, I am not sure I would have received the same drug regimens at the first hospital or even been sent to Froedtert for specialized spinal cord rehabilitation. Without Christopher Reeve or the Reeve Foundation proving that people living with quadriplegia can still live full and productive lives, I’m not sure anyone would have had any hope for me at all.

##

  • Share/Bookmark

I follow @UnitedSpinal on Twitter and have found that they are generally a decent resource for information on spinal cord injuries. Still, this recent tweet ticked me off:

A person with a disability may be well qualified and in need of income, but still not ready in attitude to work. http://bit.ly/bPXQIA

It links to an article entitled “Is She Really Ready to Work?” by Tamar Asedo Sherman, who is presumably some sort of vocational rehabilitation counselor or job placement specialist. Sherman describes her interaction with “Patty”, a client with a “disability is of a physical nature, with swelling of her legs making it hard for her to move around and making her a potential candidate for knee replacement surgery”.

Sherman goes on to explain that she has practically bent over backwards trying to get Patty a job by helping her with resumes, job applications and contractions, but Patty always seems to have an excuse for not helping herself: her computer is broken, her legs are swollen, etc. Sherman concludes the article by congratulating herself for setting Patty up with a one-day gig as a phlebotomist even though Patty had to cancel at the last minute. In fact, Sherman blames Patty for not being “ready to work”:

Maybe Patty’s disability was such that she really was not able to return to work at that time, I thought, even though she wanted to. Many people are in denial as to the extent of their disability. Was Patty one of them? … If you were in my place, would you think Patty was ready for work?

This article infuriated me for so many reasons. The first is the condescending attitude that Sherman took towards Patty. She judged Patty based on an able-bodied standard and failed to think about what else might be going on in Patty’s life and/or health that might be impeding her ability to work. Does she have invisible disabilities or physical issues that could impact her health on a given day and are too embarrassing to tell a snobby voc rehab counselor about? Since this is a website about spinal cord issues, I can think of a few medical things I’ve got that I sure as heck wouldn’t talk to a voc rehab person about.

Second, the one-day job Sherman sent Patty to was for a phlebotomist at a health fair. Let’s think about that: Generally, people who work at any kind of fair have to stand up all or most of the day and every single phlebotomist I’ve seen has done his or her work standing up. Also, I have problems with my legs swelling since my spinal cord injury and I can imagine how painful they would be after standing around at a health fair for an entire day. I am sure this is something that Patty thought about when she backed out on the job and Sherman did not.

Third, Sherman wrote this article from her perspective: how hard she worked to get Patty a job, how little Patty contributed to her job search and how ungrateful Patty was to her (Sherman).

How could this have been handled better? I would have loved for Sherman to have made Patty’s job hunt more Patty-centric. Rather than simply chalking Patty’s unemployment up to depression or lack of initiative, Sherman should have taken the time to ask more questions: Are there any other physical issues going on? Does Patty have any environmental or lifestyle barriers to employment? (child care or other caregiving, appropriate clothing, transportation, etc.) And yes, someone, probably not Sherman, should ask Patty if there are any psychological barriers to employment. This is the last step, not the first, though.

There are so many barriers to employment for people with disabilities and/or chronic illness that it is insulting and discriminatory to simply chalk it up to depression and laziness. There were so many ways for Sherman to help her client, Patty. Unfortunately, she failed miserably.

If you have time, please read the article. Then come back here and let me know what you think in the comments section below. Thanks!

##

  • Share/Bookmark

This week, Congress is considering a big tax extenders bill, which will include the “doc fix” for Medicare and extra funds for Medicaid. According to NPR, if Congress doesn’t take action by June 1:

Doctors could see their Medicare payments slashed by 21 percent. … The legislation would also continue the extra federal payments to help hard-pressed state Medicaid programs.

As I discussed on Friday (and reinforced by Sen. John Cornyn and the Wall Street Journal here), low Medicaid and Medicare payments hurt patient care. Low Medicaid payments hurt women especially, as we are 71% of the program’s adult beneficiaries.

Here’s what you can do to help: Contact your representative and senators by phone or email. (You can find your representative and senators’ contact information at Congress.org.) Ask them to vote for tax extenders bill and the “doc fix” so that Medicare and Medicaid payments won’t be cut. If your mom, grandma, cousin, aunt, neighbor or friend is on Medicare or Medicaid, tell be sure to tell your representative/senator’s office that. It helps to make it personal.

Here’s a sample telephone script (I live in Wisconsin):

Hi, I’m calling to ask Senator Feingold to vote for the tax extenders bill because I understand it includes the “doc fix” and additional funds for Medicaid. I’m on Medicaid and my aunts are on Medicare and we really need these safety nets. Please ask Senator Feingold to vote for the bill.

I would write something similar in an email:

Dear Senator Feingold:

Please vote for the tax extenders bill, with the “doc fix” and additional funds for Medicaid. I’m on Medicaid and my aunts are on Medicare and we really need these safety nets.

Thanks,
Danine Spencer

That’s all there is to it, really! Your calls and emails do make a difference so please go to Congress.org, enter your zip code in the little box on the right hand side where it says “Get Involved”, find your members of Congress and do what you can to help women and girls on Medicaid and Medicare.

  • Share/Bookmark

I generally try not to say anything negative about specific doctors, clinics or hospitals in any printed format, including online, because let’s face it: those folks have better lawyers than I do and they could sue the pants off of me, even though every word I’ve said is true (to the best of my knowledge and recollection).

Still, l had something happen at a doctor’s appointment recently that I think needs to be talked about. It doesn’t matter who the doctor was or where the clinic was. It doesn’t even matter whether the doctor was a man or a woman. It’s a long story, but I was treated very poorly and I actually walked out of the appointment. The doctor was rude, abrasive and extremely condescending. S/he acted as if s/he didn’t want to treat me, as if my case was too complicated and time consuming.

I believe I was discriminated against because I have Medicaid for my health insurance. After I left, I couldn’t figure out why a doctor would treat a patient that badly and the best explanation I can come up with is that s/he wasn’t getting paid enough to make my case worth her/his time and energy.

In other words, the Medicaid reimbursement rates in our area must be pretty low and if a doctor is driven by profit, taking a case like mine would not be cost-effective. This concerns me, not just on a personal level, but on a national level as well. 1 in 10 women receives her health coverage through Medicaid. For low-income women, this statistic is even higher: 1 in 5 women have Medicaid. These numbers are only expected to rise as approximately 17 million people will be enrolled in Medicaid as health care reform is enacted over the new few years.

Increasing Medicaid enrollment without boosting doctors’ reimbursement rates leaves poor and disabled women open to discrimination and abuse.

I worry that even if a doctor does accept patients with Medicaid, some patients with complicated cases will be turned away by doctors who don’t want to treat them. If they are lucky enough to find a doctor, they may be forced to accept substandard care or facilities. During the health care debate last winter, Sen. Lamar Alexander (R-TN) called Medicaid:

a medical ghetto called Medicaid that none of us, or any of our families, would ever want to be a part of for our health care.”
I thought he was exaggerating and took the senator to task on my blog. As time went by, I realized that while I have had really excellent care and providers, others may not be so lucky.

After thinking about it, I can see that I’ve had the best experiences with Medicaid providers who were part of large clinics and/or hospitals. It always seems to be the independent contractors – the little guys and gals at private clinics – who either refuse to treat me or have a lousy bedside manner when they do.

The Department of Health and Human Services (HHS) even admits that it doesn’t pay for some doctors to take the cheap Medicaid patients on:

Medicaid payment is often very low. Low payment rates discourage provider participation in Medicaid… Rural areas usually do not have sufficient patients to fully support a doctor’s practice.

The HHS website I linked above goes on to list suggestions for how the Health Resources and Services Administration can use Medicaid funding to improve rural health care for Medicaid patients but at the end of the day, money talks: Congress will have to increase the reimbursement rates so doctors can afford to treat Medicaid patients. As feminists, we need to push Congress to do this so women and girls on Medicaid (and Medicare) receive the best health care possible.

Driving home from that doctor’s appointment a few weeks ago, I was angry and upset, not only for me but also for the millions of other women who are currently on Medicaid or will be soon. Regardless of our income level or what insurance we have, we all deserve dignity, respect and first-class health care.

  • Share/Bookmark

So, I’m back. The website was down for a while as I transitioned to a web server and got everything all spiffy-looking. Do you like it? The pink cosmo in the header is actually from my very own garden. (Yes, I am shamelessly begging for compliments.)

While I was offline, I’ve been thinking about where I want this blog to go and what kind of activism I want to be doing. I am a feminist and will always write about and fight for women’s rights. I am also a woman with multiple disabilities and I have started to shift my energies into fighting for disability rights. However, as time has gone by, it seems downright silly to me that disability rights are not a core element of the feminist movement. According to the Centers for Disease Control and Prevention (CDC), as many as 1 in 5 women in the United States are living with disabilities. Surely an issue that affects 20% of U.S. women is a feminist cause, right?

Well, not really. Disability rights and feminism have historically been separate movements and it’s time to change that.

While other feminists with disabilities have tried to end discrimination and harassment of people with disabilities by focusing primarily on ableist language and privilege, I believe we need to think bigger.

I subscribe to the social model of disability:

The social model of disability, on the other hand, sees disability as a socially created problem and not at all an attribute of an individual. On the social model, disability demands a political response, since the problem is created by an unaccommodating physical environment brought about by attitudes and other features of the social environment.

What this means is that although I may have a hearing impairment (among other things), it is not what disables me. My hearing loss in itself is not what keeps me from fully participating in society. Instead, I am disabled and left on the sidelines of society because there are:

  • too many jobs that depend on being able to hear and listen, such as simply being able to return phone calls on a regular basis (I don’t always hear well on the phone, especially if I have to take down information)
  • too many restaurants, stores, theaters, auditoriums, churches, and other public spaces with background noise and bad acoustics that make it difficult to socialize, network and simply be with people
  • too many unintelligible PA systems in stores, airports, subways, airplanes, and public and private buildings of every sort that provide relevant and important information (I freak out a little on planes every time the flight attendants come on over the PA and I can’t understand a word they’re saying. Are they saying something I need to know, something safety-related, or are they just announcing they’ll be coming along with the drinks cart?)
  • too many teachers and professors who don’t talk loud enough, fail to provide written notes/outlines/PowerPoints so I can follow along or simply just talk to the black/white board

Those are just a few of the ways I am disabled by my hearing loss according to the social model of disability. As feminists, I think we need to be doing more to support our sisters with disabilities. Temporarily able-bodied (TAB) feminists need to join the fight to help women with disabilities secure our rights in the following areas:

  • Health care (including reproductive rights)
  • Education
  • Economic rights
  • Sexual assault and domestic violence
  • LGBT issues
  • Immigration
  • Social Security
  • Women in the military and women veterans
  • Employment

This is not an all-inclusive list and I am 100% positive I have forgotten some very important issues. I apologize for that in advance. Also, it goes without saying that all of these issues must be viewed through a multi-racial, multi-ethnic lens. Being disabled is not just about white, middle-class women. It is just about ‘American’ women, either. While I will probably focus more on North American women, disability is an international issue and we need to be mindful of that.

In the coming days, weeks and months, I plan to talk more about all of these things. I hope you’ll join in the conversation.

  • Share/Bookmark

Dear friends,

Please excuse the mess. I just moved this blog to a new server and am trying to spruce it up by giving it a face-lift. It may look a little goofy for the next few days as I tinker with different WordPress themes and adjust all the bells and whistles. Please hang in there with me and I promise everything will be back to normal soon!

Thanks,
Danine

  • Share/Bookmark

Blogging Against Disablism Day, May 1st 2010

Last Saturday, May 1, was Blogging Against Disablism Day. (Disablism is also known as ableism in the U.S., where I live.) This international event was hosted by Diary of a Goldfish, with hundreds of bloggers participating. Here are a few of my favorite posts:

Red Vinyl Shoes: Full Disclosure

I regularly have to take off work to go to doctor’s appointments. Most employers aren’t too keen on that; luckily my current employer is very willing to accommodate my schedule. Working on writing at home, it’s easy to fit a nap in without affecting productivity. When going on job interviews I keep these things to myself. It’s hard enough getting hired as a fat black woman, much less adding my disability to the pot of stew they’d rather not eat.

Disability: Active Academics: Looking For Parallel Themes

Although as far as the polices, documents and acts are concerned, equality in women’s education has been successfully programmed over the years, no such development has taken place in the case of disabled persons,whose education continues to be haunted by the modern-day segregationists’instrument of special schools.”

Even Grounds: Rosa Parks Is Not Done Teaching Us

We are discriminating against people with disabilities…. You could say that it is incorrect, because of the Section 508 of the Rehabilitation Act that requires to make information accessible to people with disabilities. It only applies to the Federal Government, and to those states which adopted an accessibility legislation. In the private sector, which creates most of the web sites we use on a daily basis, there is no such regulation. Nobody is required to make a private web site accessible to people with disabilities by law.”

Normal is Overrated: Of Privilege and Auditory Processing

The Normal Auditory Processing Privilege Checklist

  • I can watch first-run movies in any theater and still understand a majority of the dialogue without having to attend a specially scheduled screening with subtitles.
  • I can watch movies on streaming services and comprehend the dialogue with the same ease that I could with a DVD rental.
  • TV shows are equally accessible to me whether I record from TV or watch them online. I could drop my cable TV subscription without losing access to those shows. continued….”
  • Wheelchair Dancer: Movement is Radical

    Movement — no, moving as a disabled person — is the most radical thing I/you can possibly do. Let me say this again. Moving your body is possibly the most radical thing you, I, and we can do. I have often danced around this topic, saying things like “Mobility is at the core of the movement.” Now, I want to pop a wheelie, spin around, turn a cartwheel and say loud and clear: “Movement is the movement.

    Women’s History Network Blog: Blogging Against Disablism

    How much more problematic then was the disabled female body? And perhaps this is the question that historians have yet to answer. There is a growing body of work on mental illness and on the impact of institutionalisation on both care of people with certain types of disabilities and how this impacted on their civil and human rights- yet, there is a lot less work on what it meant to be disabled- and particularly what it meant to be female and disabled.

    There are many more BADD posts listed at Diary of a Goldfish so please, go check them out!

    • Share/Bookmark

    Disability Rights is a Feminist Issue

    More here and here.

    ##

    • Share/Bookmark