I need a big favor. I really want to go the Netroots Nation conference in Las Vegas on July 22-25. Unfortunately, the costs of attending this conference are extremely prohibitive. Registration starts at $295. Luckily, there are 40 open scholarships for people who cannot afford to attend. There is a catch, however. (Isn’t there always?) The scholarships are awarded partly on a voting system so can you please, please, pleasevote for me?
Just in case you need an added incentive to vote for me, here’s why I want to go to Netroots, taken from my scholarship application:
Because of my disabilities, I have been on SSI (disability) for the past five years and simply cannot afford to come to Netroots Nation. However, I would use the opportunity to learn how to become a better blogger, activist and advocate for women and people with disabilities.
So now that you know why I want to go to Sin City in July, please click on this link and vote for me!
I’m hearing impaired. I was born with a 60% hearing loss in my left ear and an 80% loss in my right ear. I have worn a hearing aid in my left ear since I was three years old and in my right ear sporadically. It’s hard to explain but wearing a hearing aid in the right ear doesn’t really help all that much. It sort of provides a surround-sound effect that is distracting, like background noise that doesn’t really add anything to my listening experience. For instance, when you’re talking with a friend in a café, do you want the radio turned up or down? It’s easier to hear your pal when the radio is turned down, right? Well, it is for me, anyways. Wearing the right hearing aid is a lot like that.
As a pre-schooler, I attended a special early childhood education program for deaf and hearing impaired kids in an elementary school across town. I don’t know if it was because we were in an early childhood program or if it was because we were special ed, but our little class was completely segregated from the rest of the school. I rarely ever saw any of the other kids. We didn’t eat together, play together, attend school-wide assemblies together, nada. Something about that experience felt inherently icky to me, even at the wee ages of 3, 4, 5 years old. When it came time to decide whether or not to continue on in the hearing impaired program for kindergarten and elementary school or be mainstreamed into the school two blocks from my house with my best friends from the neighborhood, I didn’t hesitate. I wanted to be “normal” and go to school with my friends and my sister at the “regular” school.
Once I started kindergarten, I stopped signing, like I had been in the hearing impaired program and I started living completely in the hearing world. The choice was mine. It was instinctual. With all due respect to the Deaf community, my six year-old self knew I had to learn how to “pass” as hearing in order to survive in this world. It hasn’t been easy and I have often felt like I haven’t belonged in either world, the hearing or the Deaf. I am not completely hearing and I don’t sign any more.
But I made my choice and I lived with it. There’s a lot I haven’t heard, a lot I’ve missed out on. When I go to weddings or parties, I hear almost nothing. Everything becomes white noise. I usually don’t hear things over a loudspeaker, especially if there’s background noise. (Dear airlines, subway operators and any other crowded places, this means you.) Auditoriums and convention centers usually have horrible acoustics, with a million places for microphone sound waves to bounce all over the place.
In other words, sigh. I do the best I can. My hearing aid is really pretty good but it will never make up for my hearing loss, not 100%. There have been times when I’ve wondered if I made the wrong choice. Should I have forsaken the hearing aids, kept signing and remained in the Deaf world? I watch people signing and am jealous. I wish I could sign. I wish I could belong to them, but I don’t.
Marlee Matlin’s new show, My Deaf Family, is a poignant reminder of that. The “Pilot” episode tells the story of the Firl family, narrated by eldest son Jared. His parents are Deaf, as are two of his siblings, Sabrina and Gideon, but Jared and his little brother Elijah are hearing.
The show is fascinating. I love watching the whole family signing. I love that their communication is not dependent on their ability to hear. I watched the show twice; once, with sound and once, without. I liked it better without sound. It felt more authentic. The audio version includes interpreter voiceovers for the parents’ interviews which was completely unnecessary. Subtitles-only would have been far more appropriate, in my opinion. It felt like the voiceovers were included for hearing listeners’ benefit and if they’re going to be immersed in the Deaf world, they should get the real deal. They don’t need any accommodation.
I loved that the family was shown being really normal: the kids played video games and basketball, they fought over cinnamon rolls, Jared got grounded for not doing his homework, and the mom ordered pizza.
I loved that Bridgetta, the mom, calls being Deaf “a gift”. I wish I had her grace. I have always been ashamed of my hearing loss. I have tried to hide it. It has been the bane of my existence. If I could get rid of my hearing aids and be able to hear normally, I probably would. (Maybe not. I don’t know.)
In any case, I really liked “My Deaf Family”. I hope there will be more episodes to come as I think this series has the potential to shed some light on what it is like to live with Deafness and hearing impairment.
If you haven’t watched “My Deaf Family” yet, check it out:
If you go to the YouTube site, you can watch the show with closed captioning. I definitely recommend that!
I am embarrassed to admit that, before this morning, I had never heard of Dorothy Height. Ms. Height, who died this morning at the beautiful age of 98, was apparently one of the most important civil rights leaders of our time. In a statement, President Obama called Ms. Height “the godmother of the civil rights movement and a hero to so many Americans.”
According to the New York Times, Ms. Height was a part of Martin Luther King’s inner circle and was on the platform at the Lincoln Memorial when Dr. King gave his famous “I have a dream” speech in 1963. Ms. Height was president of the National Council of Negro Women and helped to found the National Women’s Political Caucus, along with women like Gloria Steinem and Shirley Chisholm. More from The Times:
Ms. Height is widely credited as the first person in modern civil rights era to treat the problems of equality for women and equality for African-Americans as a seamless whole, merging concerns that had historically been largely separate.
In other words, Ms. Height was an important leader in the fight for civil rights and women’s rights. Why haven’t I ever heard of her before? Why isn’t Dorothy Height a household name like Martin Luther King or Rosa Parks?
I had two U.S. history classes in high school, one of which was Advanced Placement. Why didn’t I learn about Ms. Height in one of those classes? I graduated from college and even took some women’s studies and gender theory courses. Ms. Height’s name was not uttered there.
At this moment, I have two books on U.S. Women’s history in my possession. The first is American Women’s History: An A to Z of People, Organizations, Issues and Events by Doris Weatherford. Ms. Height is not mentioned in this so-called encyclopedia. The second book is Gail Collins’ When Everything Changed: The Amazing Journey of American Women from 1960 to the Present, which, if you haven’t yet, you really must. A quick glance at the index reveals that Ms. Height is referred to four times in the book. Now I feel doubly sheepish because I hadn’t done all of my research before starting to write this post.
But whatever.
Even though I had read about Dorothy Height in one book once, I still really didn’t know who she was. As a society, we need to do a better job recording and re-telling the histories of all Americans, not just white men.
In the meantime, I can say “thank you”.
Thank you, Dorothy Height. Your life and work will not be forgotten.
UPDATE 6:04 PM: After thinking, and honestly, worrying about how this post could interpreted, I want to clarify something. As an adult, progressive and feminist, I don’t expect to be educated about African-American/American history. What infuriates me is that, to a great degree, Dorothy Height has been written out of American/U.S. history. We need to write her back in and others like her.
Five years ago today, I was enduring my second day of inpatient rehab following my spinal cord injury: hours of grueling physical and occupational rehabilitation during the day, followed by range of motion exercises in the evening. During my free time, what little there was, I watched the news. I remember watching the local news at 5:00 PM on Milwaukee’s WTMJ, then NBC’s Nightly News at 5:30 PM, and leaving WTMJ on for the 6:00 PM broadcast as well.
Pope John Paul II had just died and I, like Catholics the world over, mourned his death. John Paul was imperfect but I believed he embodied holiness on Earth. Well, as much as anyone who is a part of the white, male patriarchy is that is the Vatican can embody holiness and godliness, but you know what I mean. I had faith in Pope John Paul II. I knew that in his heart of hearts, he was trying to do what he believed was God’s work.
As I watched the funeral proceedings on TV and later held my breath with the crowds gathered, waiting for that decisive black smoke that would announce a new pope had been elected, I hoped against hope that this was a new day for the Church. I hoped the new pope would be from Latin America or Africa. I hoped the cardinals would choose someone who wasn’t a part of the Vatican bureaucracy and would help bring the Church’s mission back to social justice: feeding the hungry, caring for the sick and helping the poor. In other words, I hoped they would elect someone who would do what Jesus would do.
My hopes were dashed. The cardinals, as we all know, elected Cardinal Joseph Ratzinger, a Vatican insider originally from Germany. He was said to be very conservative, but the conventional wisdom was that he was elderly and wouldn’t serve very long. I actually heard one papal pundit call him a “placeholder pope”. How much damage could Ratzinger, now Benedict XVI, do?
Unfortunately, way too much. Benedict has railed against the use of condoms in fighting the HIV/AIDS epidemic in Africa. The Vatican is actually investigating American nuns for, honestly, I’m not sure what. Having brains and using them? Then there’s the sex abuse crisis, both here in the U.S. and in Europe.
How much damage can this man do? When do we Catholics get our Church back?
I took the hint and went to see my eye doctor yesterday. He had good news and bad news. The good news was that they weren’t any worse than they were at my last appointment, sixteen months ago. The bad news is that they’re still pretty lousy.
My eyes are pretty screwed up. When I was injured five years ago, the third nerve was damaged pretty badly and I now have double vision, as well as an ultra-fun condition called nystagmus. The double vision is pretty self-explanatory: without corrective lenses, I see two of everything. (Of course, sometimes it seems like I can see an infinite amount of objects, such as when I’m trying to focus on an object right in front of me. Say I have a pen in my hand. As my eyes switch from one to the other trying to decide which is the ‘real’ pen, my eyes become like a set of opposing mirrors, forever trying to focus on one pen, an impossible task.)
I also have nystagmus, which basically means that my eyes jump up and down. This was really hard to get used to at first but as the years have gone by, I’ve become somewhat accustomed to it. That’s a good thing, as there really isn’t any treatment for nystagmus.
And lest I forget, I also have my garden-variety near-sightedness, which bestowed upon me my first pair of glasses at age eight and my first pair of contacts at age eleven. Yes, I know that was probably too early for contacts. At the time, the optometrist said other docs would probably balk at prescribing contacts for someone my age but I was having headaches from wearing the (Diet) Coke bottle lenses so that was the best option. (I call them “Diet” Coke bottle because 1) they weren’t as bad as in the sixties and seventies but not the super-ultra-dooper wonder-lite lenses of today and 2) I lurve Diet Coke. With a passion. To the Nth degree. A lotta bit. Yeah. Like that.)
So how’s your eye health? Do you know have you been to the eye doctor lately, aka your friendly neighborhood optometrist (or even ophthalmologist) lately?
Prevent Blindness America (let’s call it PBA, I’m feeling lazy today) thinks you should and so do I, for that matter. (I don’t know where this sass and vinegar is coming from today, but I like it!) According to PBA:
More women than men are diagnosed with eye diseases such as glaucoma, cataracts, macular degeneration and diabetic retinopathy
Women may experience changes in vision in various stages of their lives including pregnancy and post-menopause.
More than 2.3 million women (out of 3.6 million people total) live with visual impairment, including blindness
6 million women (vs 3 million men) have dry eye syndrome, a condition where not enough natural tears are produced.
Every woman needs to take care of her eyes but women of color need to be especially vigilant about because, believe me, vision problems of any sort aren’t fun. 1 in 3 Americans/USians who have glaucoma are African-American and glaucoma is the leading cause of blindness among African-Americans. Latinas should be aware that they, too, are prone to startlingly high rates of rates of eye disease and visual impairment. Asian/Pacific Islanders and American Indian/Alaska Native women have a greater risk of developing diabetes, which can have various eye diseases as a complication.
Pregnant ladies? Eye disease is one more thing you have to worry about. The increased hormones can cause “refractive changes, dry eyes, puffy eyelids that obscure side vision and sensitivity to light due to migraine headaches.” If you have blurry vision or are seeing spots, you should call your doctor immediately, since this may be a sign of high blood pressure or diabetes. The PBA suggests, “All women who are diabetic and pregnant or who are planning to become pregnant should get a full, dilated eye exam.” As if you didn’t have enough to think about. Good grief.
In case this post sounds über-bossy, please remember that I live with really, really insert-your-own-swear-word eyes every day. It impairs my life in a lot of ways that are hard to even begin to describe. If I can spare you even a little bit of this, well, yeah, I’d like that.
So what are you waiting for? Go call the optometrist!
Sunday was the anniversary of a really good day. A great day, in fact. It was the fifth anniversary of the day I was admitted to Froedtert Hospital in Milwaukee, Wis., where I where I stayed for the next two months. I’m sure most people wouldn’t commemorate the anniversary of the day they entered a hospital for two months, but April 11, 2005, was a day that changed my life.
The story really begins five weeks early, on March 2, 2005, when I was admitted to another hospital, also in Wisconsin. (I’ll call this hospital “Hospital X” for the simple fact that I don’t wish to give them free advertising on my blog, for various reasons.) I had been sent to Hospital X from my home in northern Wisconsin because I was having headaches and the doctors suspected my shunt was malfunctioning. (I have Dandy Walker syndrome and hydrocephalus, which produce excess cerebrospinal fluid, aka CSF, in the brain. If the CSF isn’t drained with a shunt, it puts pressure on the brain and bad things can happen. Including death.)
It’s a long story, but while I was at Hospital X, I had a lot of other days that changed my life. On March 5, 2005, I went into respiratory arrest (“coded”). I was intubated, put on a ventilator and transferred to the ICU. On March 6, 2005, I was extubated, after which I promptly coded again. That was fun. During this time, the paralysis settled in and by March 8, 2005, I was paralyzed from the neck down, including my vocal cords. In other words, I became a quadriplegic. I couldn’t speak and communicated by mouthing words and using letter boards. (More on this in a future post.) I spent most of my time at Hospital X in the ICU and experienced many oh-so-fun things like cardiomyopathy, pneumonia, blood clots, a subdural hematoma and countless procedures.
I was really, really, really sick and for a while, they didn’t expect me to live. But of course, I did. In early April, I was well enough to be transferred from the ICU to the regular neurology floor as the social workers and case workers made plans to transfer me to rehab. At that point, I had been in the hospital for over a month. I just wanted to go home. The reality hadn’t set in yet that I was a ventilator-dependent quadriplegic who needed total, and I do mean total, care. And bless me, I thought I could go home to my mom’s house, where she could take care of me 24-7, because moms are super-human, right? Yeah, right.
So it was that on April 11, 2005, I was transferred from Hospital X to the Spinal Cord Injury Center at Froedtert Hospital in Milwaukee, where I spent a week in the acute care. The doctors did their own tests and determined that I had probably had either a brain stem stroke or a spinal cord infarct at the C4 level. After a week, I moved to the rehab side of the unit, where I stayed until I went home on June 9, 2005.
Being in rehab at Froedtert was one of the best things that ever happened to me. (It was unbelievably hard, stressful and exhausting, but still one of the best experiences I’ve ever had.) When I got there, the doctors expected me to be a quadriplegic for life. My physical therapist didn’t care. He decided he would make the most out of whatever time he had to work with me and little by little, just got me moving. By the time I left, I was walking about fifty feet with a walker. I had gotten a lot of mobility in my left hand and arm, thanks to my occupational therapist. The right hand and arm would come back later. My speech therapist rocked so I was even talking again, although I couldn’t swallow well enough to eat. That would happen later, too.
I left Froedtert on June 9, 2005. That was a good day, too. Hard, but good.
I wanted to write this post because I have spent the past month and a half in a state of remembrance. I’ve wanted to talk and blog about my experiences but it’s hard when I haven’t explained the back story. I plan to refer to this post in the coming days, weeks and months so I hope you come back and keep reading. Thanks!
So in case you haven’t heard, Rep. Bart Stupak (D-MI) is retiring from Congress when his term expires in January. When the news broke this morning, feminists rejoiced. (Republicans and Tea Party activists are ecstatic, too, but that’s another story, one that other people are much more qualified to talk about.)
Personally, I am thrilled Stupak is retiring, but unlike many feminists, I see this as more than a victory for women and reproductive rights. It is a victory for the people that Stupak was elected to represent: the residents of Michigan’s 1st Congressional District. (After this, I’ll refer to 1st Congressional District as CD1.) CD1 encompasses the entirety of the Upper Peninsula of Michigan and several counties in the Lower Peninsula. (Apparently, the mitten part is called the Lower Peninsula. Who knew?) He was not elected to represent the residents of the C Street house, the religious organization known as The Family, the U.S. Council of Catholic Bishops or the anti-choice movement.
Obviously, Stupak was and is free to vote according to his conscience and convictions. Since we live in a democracy, that is one of our founding principles. Another one of our founding principles is a representative government. When Stupak became the de facto leader of the anti-choicers in the House and nearly killed health care reform over the issue of abortion, he was no longer representing the CD1. Stupak put the needs if the “pro-life” movement ahead of his own constituents.
CD1 residents didn’t need an anti-abortion activist to advocate for them in the health care debate. They needed their member of Congress. The 118,000 seniors on Medicare who live in CD1 needed a representative working to close the so-called “donut hole” that can sometimes cost hundreds, if not thousands, of dollars a month. 324,000 women needed him to make sure that maternal and preventative health care is covered. Since the district is extremely rural, with the largest town having a population of 20,916, residents across the CD1 needed him to work on improving Medicare/Medicaid reimbursement rates for rural doctors and providing other much needed assistance to rural medical providers.
In short, Bart Stupak failed residents of the 1st Congressional District. They deserve better. Whether his successor is a Democrat or Republican, I hope they get it.
I’ve been doing some research on asset-building for people who receive Supplemental Security Income (SSI) payments when I came across a few staggering statistics about people with disabilities:
People with disabilities are more likely to be unemployed and to live in poverty than any other single demographic group in the United States today.
As many as 70 percent of people with disabilities are unemployed.
One-third of adults with disabilities live in households with total income of $15,000 or less, as compared to only 12 percent of those without disabilities.
More than 65 percent of individuals in poverty for 36 months or more during a 48-month period have a disability.
The poverty rate among people with disabilities is increasing relative to that of working-age people without work limitations.
Contrary to many people’s misinformed opinion, being on SSI is not a ticket to easy street. I am on SSI. My federal SSI payment is $674.00, or 74.6% of the Federal Poverty Level for a family of one. I live with family and am able to share expenses so I am able to able to maintain a middle-class lifestyle. I am one of the lucky ones.
There is a lot of discrimination and bigotry towards people who receive disability payments. I don’t know if it’s the same in other parts of the country but here in Wisconsin, people on disability are looked at suspiciously. We are judged. Others wonder why it is we can’t work because even if body part X doesn’t work, body parts K, L, M, N, O and P sure as heck do. Surely we could type or answer phones or at the very least be a greeter at Walmart!
What all of these people don’t see is the physical toll our disabilities and impairments take on our bodies. They don’t see that my self-cares take several hours in the morning and that some times, by the end, I’m so exhausted I don’t have the energy to do anything else but read a book that day. They don’t see that I may look able-bodied and “normal” but that I really and truly did have a spinal cord injury. My body is not the same as it used to be. I ran errands around town for several hours yesterday. I’m really tired today. I don’t know how I would’ve gone to an 8-hour work-shift job today, if I had to.
My long and winding point is this: Unless you really and truly know the individual personally and know they are being “lazy” and defrauding the system, don’t judge someone for receiving SSI/disability payments. It’s not an easy life. We don’t need your pity but we also don’t need your scorn.
