Cool Video

Check out this cool cross-disability video from several countries in the Middle East:

http://uk.youtube.com/watch?v=ylFwcdNfVhE&feature=email

Watch the Whole Speech

Obama made a speech this morning on the wider issues raised by his association with Rev. Wright. If you have the time, I urge you to watch, listen and/or read the entire speech. I am sure various news outlets of every political stripe will feature soundbytes of portions of the speech, but to really appreciate what he is saying, you need to experience the whole.

You can find it here: http://my.barackobama.com/hisownwords.

Someone told me that the pundits are already saying that the speech was "too nuanced" for the average voter to appreciate. I am glad he didn't dumb it down, personally. I think one of his attractions is that he is giving voters the benefit of the doubt about being able to grasp the subtleties of the issues.

I Can Relate

One thing that struck me, while I was listening to his speech is that as a "disability rights advocate" I have experienced hearing a so-called ally say things I vehemently disagreed with, or that merely made me uncomfortable. I call it the "don't be on my side" phenomenon. But, unless someone says something that I simply cannot allow to stand, I may remain silent. We need solidarity, or at least the appearance of solidarity in the face of all of the various forces that would weaken our perpetual struggle to equality.

The very title of this blog, "Crip Chronicles" offends some people -- for using the word "crip". But, as a young disabled person, particularly when I first started being integrated in high school, the words "crip" and "angry crip" was used by my older, disabled classmates to refer to US, who were struggling for equality.

I try to be politic about where and when I use the term. But, I know when I have found a brother or sister in the "disability rights movement" when they are comfortable with the use of "crip". And I also know that you can hear some pretty angry and hostile talk when a bunch of angry crips get together and talk about the wrongs done to them by TABs [temporarily able-bodied], the system and the man.

Fly Me to The Moon...

In the course of web surfing, I found this link today: http://www.iflymat.org/index.html for Mobility Air Transport.

If they get this off the ground (pun intended) it will be the greatest thing since sliced bread for wheelchair users. Check it out.

I Got a Check from Ebates

I got my quarterly check from Ebates today ($22 and change), and saw that they're having a special deal until March 31st, so I thought I'd mention them again. Through March 31st, they are increasing their sign-up bonus to $10 from $5 (to get the "free" money, you have to place an order at one of their stores; if you don't order anything until after March 31st, you will just get the usual $5.)

Here's the link:

www.ebates.com/refer-a-friend/bonusoffer/index.htm?id=1935512

I promote this for a couple of reasons -- one is that, yes, I also get a bonus when someone signs up through my link. But also, I post it on "Crip Chronicles" because I think that if you have any kind of mobility impairment and you're not doing the bulk of your shopping online, you're really missing a great boon to your quality of life.

Secondly, who needs a little extra money more than we do? They've got so many store listed now, that it is easy to get a little cash back on a lot of things -- just this month, I got rebates on my groceries at Safeway.com (yes, it is only 1%, but that's 1.15 I didn't have before), on filing my taxes at TurboTax, and on slippers from FootSmart.com.

'Nuf said.

Elected Representatives Respond re: ADA Restoration Act

The day that I posted the call (from AHEAD) to write to our elected representatives to ask for support for the ADA Restoration Act, I did just that -- sending 3 very similar emails to my senators and congresswoman.

While I have signed petitions in the past, I believe this is the first time I'd actually written to my elected officials, and was surprised to get a response from each, via email, over the course of the following 10 days.

If you're keeping score, both Senator Barbara Boxer and Representative Anna Eshoo both said unequivically that they were in strong support of the ADA Restoration Act. Eshoo is a co-sponsor of the legislation.

Senator Diane Feinstein said, after saying that she understood my concerns, "Please know I will keep your thoughts in mind should this legislation come before the full Senate." Sounds like a variation of "science is looking into it", and a strong reluctance to make any promises.

Tell your Representatives to Support the ADA Restoration Act

In the interest of time, I quote an email I received today (I am a member) from AHEAD (Association on Higher Education and Disability):

"On January 29th, 2008, the Education & Labor Committee of the US House of Representatives held a hearing on The Americans with Disabilities Restoration Act (H.R. 3195). This bipartisan legislation is widely supported by members of Congress and organizations nationwide and holds the promise of restoring the original intent of the ADA.

As an organization committed to the ideals of the Americans with Disabilities Act, AHEAD endorses H.R. 3195 and encourages its members to become informed about this vital, pending legislation and to take action to support its passage (see below). This is particularly important as organizations that oppose the passage of the Restoration Act are coming out with outrageous distortions of its consequences.

The Americans with Disabilities Restoration Act (H.R. 3195), introduced by House Majority Leader Steny Hoyer (D-MD) and U.S. Rep. James Sensenbrenner (R-WI), would restore the original intent of the historic Americans with Disabilities Act.

Excerpts from testimony given at the hearing include:
"The bill does not seek to expand the rights guaranteed under the landmark Americans with Disabilities Act. Instead, it seeks to clarify the law, restoring the scope of protection available under the ADA," said Hoyer. "It responds to court decisions that have sharply restricted the class of people who can invoke protection under the law. And it reinstates the original Congressional intent when we passed the ADA."

"Despite our progress, the courts—including the U.S. Supreme Court—have narrowly interpreted the ADA, limiting its scope and undermining its intent," Hoyer continued. "We could not have fathomed that people with diabetes, epilepsy, heart conditions, cancer, and mental illnesses would have their ADA claims kicked out of court because, with medication, they would be considered too functional to meet the definition of 'disabled.'"
Andrew Imparato, president and CEO of the American Association of People with Disabilities, said that the initial promise of protecting disabled workers under the ADA has largely faded as a result of Supreme Court rulings.

"In 1990, the ADA was heralded as an 'emancipation proclamation' for people with disabilities," said Imparato.

"Seventeen years later, on account of judicial activism, we are far from having a law that can be counted on to safeguard the fair treatment of people with disabilities in the workplace."

The AHEAD Board of Directors encourages members to learn more about The Americans with Disabilities Restoration Act, http://thomas.loc.gov/home/gpoxmlc110/h3195_ih.xml and to contact their representatives in both houses of Congress to support this legislation. To contact your members of congress go to: http://www.visi.com/juan/congress/ "

I used the site above to get the links to my representatives, and it only took me about 10 minutes (using cut and paste) to send an email to each of them. I kept it short and sweet: people with disabilities are losing ground in many arenas -- support the ADA Restoration Act in an effort to keep us from losing more and more...

I Approve this Political Message...

February 5th is just around the corner, and last week, I found a reason to pick a specific candidate.

I have known for a long time that I would be voting for one of the Democratic candidates, but was having a difficult time deciding between Barack Obama and Hillary Clinton, for a variety of reasons.

The reason I found was that Obama was the only one of the two candidates that addresses and acknowledges disability issues on his campaign website. To be precise, he has a 9 page PDF position paper which you can read for yourself, found at http://www.barackobama.com/issues/disabilities/. There is also a beautifully captioned video on this page which is worth watching, particularly if you don't feel like reading the position paper.

Vote!

Whatever you do, vote. Whomever you decide to vote for, do it. Particularly in the General Election, come November. More and more states are making it easier to vote by mail, so whether or not it is a hassle for you to get out to the polls physically, you can still vote.

If you're not already registered, it is too late for a lot of the primaries, but register NOW so you can vote in the General Election.

It matters. People with disabilities have issues that are especially meaningful to us that are being discussed widely in this election, particularly the availability of health care. If the millions of people with disabilities ever made a concerted effort to be heard, we would be.

2007 Year End Wrap-up, Part I

My extended silence blogside of the last few months is due to a variety of inter-related things: battles with 2 different types of insurance companies, learning more about the ins and outs of DME (durable medical equipment -- aka wheelchairs, crutches, and the like), becoming more disabled, tuning in to the political fray of the Presidential primaries, and turning 50. I've been trying to process these experiences and come out on the other side with some take-away lessons/messages, and am only moderately successful.

First Tale of Insurance -- The Long Term Care Variety

My employer, West Coast Ivy, offers group Long Term Care (LTC) Insurance for its employees at quite reasonable rates, as these things go. Years ago, I read Suzy Orman's advice that the best age at which to sign up for LTC insurance was 55.

In summer of 2006, I went to a local Book Fair, where a woman with a LTC booth told me I should apply for it immediately, and seemed in doubt that I could get it, even though my employer had the group plan.

RE--JECTED!

In an uncharacteristic burst of naivete, I had thought that because of the nature of a group plan, I would not have difficulty being accepted for the LTC policy, and I applied for it in the Open Enrollment period of 2006, which was in November of 2006.

The initial application form asks questions about cancer, high blood pressure, heart disease -- in other words, the big, bad diseases, and whether you've been diagnosed with them. All "no". The only question with a "yes" answer was something like "have you needed mobility assistance in the last 3 years, such as a wheelchair or a walker?"

That "yes" prompted my first rejection -- to make a long story short, I went back and forth with them from 11/2006 to 9/2007, when they finally rejected me with no further opportunities for appeal. They said that they based the final denial of coverage based upon information they received from my primary care doctor and my dermatologist.

Ironic Twist

After the final denial, I was debating about whether or not to request copies of what my doctor's had said -- since the insurance company had already lied to me about what the report of a phone interview had contained, it seemed like it might be worth seeing what was said -- but I was pretty sick of the whole thing by then.

Before I could suck it up and write them yet another letter, my employer announced that for "this year only", all employees would be able to apply for the LTC insurance with no medical review -- i.e., guaranteed acceptance. This "guaranteed acceptance" also occurs within the first 30 days of hire for new employees -- but I was 37 at the time, and totally broke, and hadn't thought that would be my last chance to apply...

So, I applied again, in 2007's Open Enrollment period (for insurance year beginning 2008), and received a letter signed by Jody Ross congratulating me on my acceptance. Ms. Ross was also the signatory of the numerous letters of the past year's struggle, but she did not acknowledge this (it may well be a pseudonym -- I'd certainly use one if I had that job.)

Lessons Available, More Questions to Come

My boss, whom I had kept apprised of my struggle all year actually called me at home when she got the letter announcing this year's special acceptance policy. I spent the next month trying (with much success) to get everyone in our office to sign up.

For me at 50, the cost will be $100 a month, for the highest coverage available currently: $300/day, in an assisted-living facility, and $225 a day in my own home. There is a one-time 90 day waiting period; you must have lost the ability to perform 2 or more ADLs (activities of daily living) without "supervision" (to cover cognitive deficits) or assistance in order to trigger coverage. There is a built-in inflation provision, so that over time, both the premiums and the coverage will increase proportionately.

• Why I fought the rejection/denial of coverage: Since it is a group policy, I thought (mistakenly, apparently) that there was a higher degree of insurability available to me as a member of a group. It turns out that most of the people in my office were rejected on the first level of application, for very different reasons: one person answered "yes" to having seen a psycho-therapist in the last 3 years, one person had high blood pressure.

In other words, LTC insurance is just like most other types of insurance -- they don't want to insure you if you have any degree of likelihood of ever collecting benefits. Therefore, if you are currently very healthy and have not been diagnosed with anything, but you think you have a reasonable chance of needing assistance down the road (even if the road seems very long now because you're still pretty young), you should at least consider signing up for LTC insurance now.

• Did you know that the cost of the premiums of LTC insurance are NOT TAX DEDUCTABLE, nor can you use your Health Care Flex Plan to pay them? I was floored by this, as it seems to me there is a huge public policy interest in getting people to insure themselves for this kind of care. WTF?

• The RN that conducted my phone interview (which was during the first third of my struggle) told me that they denied everyone who said "yes" to ANY of the questions on the initial application. This reminded me of the legendary rate of denial of first applications for SSI -- regardless of the documented level of disability. I asked her if she knew what percentage of people appealed this initial denial but she said she didn't know.

I think a tremendous number of people take "no" for an answer. I never really thought I could win this appeals process, but I also really bristled at the idea that they were denying me solely because I use a power wheelchair for mobility. That seems to me to be clear discrimination -- except for my mobility impairment, I am quite healthy, and do not and have not ever received in home support services. In other words, they denied me coverage without any additional information in to my diagnosis or prognosis. Early on, even thinking I would ultimately lose, I decided to make them work for it.

And, who knows? Maybe the number of rejections and complaints by my fellow employees might have led to this year's "free pass". I feel certain they didn't do it out of the goodness of their hearts.

More 2007 fun to come...

New Post at Crip Critic

Finally, a new post at my other blog, http://cripculturecritic.blogspot.com/...

DisabilityTV.com

Through Scott Rains' "Rolling Rains" I just found this cool link to a New Zealand website for crips and their families and friends. http://disabilitytv.com/

I've only watched a couple of their videos, but THEY ARE COOL!

Ebates: A Painless Way to Save a Little Money

I am a dedicated online shopper -- I do as much shopping online as I possibly can.

I signed up with Ebates.com several years ago, and as of today, I've gotten $373 in rebates. They have over 800 stores signed up with them -- my only regret is that Amazon.com only offers coupons through them (Barnes & Noble does have a small rebate deal, though).

Click here http://www.ebates.com/rf.do?id=1935512 to check it out. Yes -- full disclosure -- I will get $5.00 for people who sign up and use the service if you go through this link. But you too will get a "free" $5.00 if you sign up.

If you have a disability that impacts the whole shopping process -- which can be a whole range of disabilities -- or you just like avoiding crowded stores and witless store clerks, try the online process.

Some people are really afraid of giving out financial info online, but I have so far not had any problems using any of the stores through ebates. One of the things to keep in mind is that you have to start with the ebates.com "portal" to do the shopping, or it won't track any of your purchases for the rebates. A couple of times, I have forgotten until the very last minutes, and have logged out and started over, just to get my rebate.

I think the average rebate is only 3-6%, but over time it adds up -- and seems like free money, when you get your rebate check in the mail.

DICK CHENEY IS A PROPHET!

http://www.youtube.com/watch?v=YENbElb5-xY

2/13/08

In the Newsweek issue dated 2/18/08, there is a quote from Pat Buchanan, a "conservative pundit" from the "Today" show, in which Buchanan said of John McCain, "He will make Cheney look like Gandhi."

Now that's scary.

Worthwhile Petition

This petition urges the Creation of a Disability Advisory Committee for the American Medical Association:

http://www.gopetition.com/petitions/creation-of-an-ama-disability-advisory-committee.html

(Thanks to Wheelchair Dancer's blog for the heads up.)

Turning the Tables

Great video on YouTube! Check it out; it shouldn't require an explanation...

http://www.youtube.com/watch?v=k3AeIFup1qY

Petition in Support of the ADA Restoration Act

I wanted to draw your attention to an important petition that I recently signed: "Keep the Promise: Restore the ADA":
http://www.ipetitions.com/petition/ADARestoration?e

I think that the more attention we can muster to get Congress to keep the provisions of the ADA from going the way of other civil rights, the better. I'd like to encourage you to add your signature, too. It's free and takes less than a minute of your time. Thanks!

And, Another

Another British Crip Blogger to revel in at Sally's Life.

Another Great Voice in the Struggle

...Because make no mistake, we crips are still in the middle of the beginning, I think, of our struggle.

I wanted to point out this entry of Midlife and Treachery, which was posted (on time!) for Blogging Against Disablism Day on May 1st. Check it out.

Disability Identity

(Many apologies to my fellow crip bloggers for the lateness of this entry -- last week really was a weak from one of the lesser circles of hell. This is my entry for Blogging Against Disablism Day -- May 1st.)

The Question

Sometimes, people will discuss the question: When defining yourself, which do you list first? I.E., a woman, a professional, a Baby Boomer, a law school graduate, a person with a disability, heterosexual, a "single", a pet owner, etc. While sometimes I think this is a frivolous question, I think it can also be extremely illustrative of not only how one thinks about oneself, but also how one's experience shapes that self-image.

The Answer

Years ago, either in my late 20s or early 30s, I figured out that if you answered this question based upon what factor/attribute has had the most impact on the totality of your life, then "person with a disability" was an easy, hands down winner as the first thing I would mention in defining myself.

No Hiding Possible

With my disability there isn't, and never was, any option to hide it or "pass". I've never not had it, since it is congenital, and the gene mutated long before I popped out and shocked the world and my parents with the odd appearance of my skin. Both adults and kids were scared of me -- so much so that I got shunted off into special ed, even though I could have managed the physical demands of a "normal" elementary school, with the one exception of p.e. I could read before most kids, and was extremely self-possessed. In the era before the IDEA, I wouldn't have needed any classroom assistance even if it had been available.

No, it was at the age of five that the discrimination began, and my parents colluded -- partly out of fear for me I suppose, and partly because they taught elementary school in my very district and didn't want to rock any boats. My parents -- with the best of intentions (although I personally despise the excuse for any bad behavior that the perpetrator is "well intended") made me feel that I must cover myself up (put your socks on, Pete is coming over) because I looked scary to other people).

The meta message was also that it was my job to make other people feel comfortable with me [since I was the different one]. There was never any indication that others -- children or adults -- had any responsibility to treat me with respect, even before they found out what was "wrong" with me.

My Question

I have a vivid memory of being nine years old, already in special ed, and asking one of the teachers, "Why is it okay to send me to a separate school because of my skin [my disability] when it wasn't okay to send kids who were black to separate schools?" This was the height of desegregation and the Civil Rights Movement -- the 1960s. And I remember that she just looked at me, with a mixture of exasperation and mystification.

I didn't enter the realm of non-segregated education -- meaning being counted on the same rolls as every other student in an educational venue until 1975 when I entered Community College, under my own steam.

Simultaneously...

Doctors never suggested a wheelchair -- or more appropriately, a power chair -- for me, even though the main problem with my disability was blistering on my feet, which was caused by...wait for it...WALKING! So, I walked with difficulty, until one day in special ed at the age of 11 or 12, I casually commandeered an extra manual wheelchair which I would use all day at school. I pushed it with my feet [some have likened this to Fred Flintstone in the old cartoons, and I think it is appropriately descriptive], but because my body weight was mostly in the chair and not on my feet, I was much more comfortable.

When I went on to high school (we were still on the rolls of the county's special ed program, but were more or less integrated for most of the day), I insisted that this spare wheelchair be kept in the "resource room" for me. I picked it up every morning, and an aide would take it back to the classroom for me when we boarded "the short buses" at the end of the day. Because the classrooms in which I took classes weren't set up with wheelchair accessible desks, I parked in the hall and walked in and sat in a "normal" desk. I didn't do this to feign being more normal, but because it was the only option that made sense to me.

The non-disabled friends I eventually made -- after a few years of being in classes with them and being a good student with a sense of humor -- were able to grasp the fact that I could both need a wheelchair and be able to walk.

Fast Forward

College, jobs, more college, law school, more jobs, independent contracting, losses, successes. Through it all, the crip card was always on the top of the deck, and not because I insisted on putting it there. That is another discriminatory concept that gets imposed on people with visible disabilities -- that if we acknowledge that people treat us differently, for good or ill, we have a chip on our shoulder. Maybe I do, now, but I didn't put it there in the first place. And it falls away very quickly when I sense that anyone I am dealing with isn't treating me in a "less than" way because I look different, and certainly am a far cry from the idealized standards of appearance that women are brainwashed into thinking as the only acceptable way to be in this society.

Romantic relationships -- pretty much off the table. Perhaps there is a guy out there for me, but I may not ever meet him. And I [mostly] made peace with that, at around 40.

Where it still makes me deeply, bone shatteringly angry is when I still encounter it in the workplace -- particularly with people I've known for a long time. It just happened again the other day -- a person above me in the food chain treated me disgracefully. And, I am certain, because she knows that I can't just simply quit -- I don't know how long it will take me to find another job, even though I'm very experienced and very, very good at what I do.

And why is that? Because of my disability, in part at least, always. I am a person with a disability -- first, last, always.

Blogging Against Disablism II

There's to be a second annual Blogging Against Disablism Day on May 1st. To participate or just get details, click on the pic:

Too Many Thoughts For Just One Blog

Mapping a Path Through the Nuances of Disability "Culture"

A close friend brought Lisa Ferris's Twinkle Little Star blog to my attention; in particular, this post, Lost in Disabilitakinstan.

It is literate, insightful and a dense commentary on multiple issues around the idea of the difference between the "non-disabled" world's cultural norms versus those of the disability community. It is so well thought out that I am thinking of taking bits and pieces (with atribution, of course) and then adding my two cents.

Be warned, Lisa doesn't break up her paragraphs often, and there is enough there for a long magazine piece; it is worth reading in its entirety.

Brava!