Tuesday, March 08, 2011

On Developmental Disability Awareness Month

Ladies and Gentlemen, here we go again! As many states (including Oregon) slash needed services, may I proclaim that March is Developmental Disabilities Awareness Month!! A time to reflect on this oft' overlooked class of the citizenry! A time to praise the accomplishments in our country on behalf of these struggling people! And a time to celebrate those accomplishments!

At some point this month there will undoubtedly be a day commemorating people with developmental disabilities in all 50 state capitols. This will need to occur BEFORE the announcements are made of how the states plan to take away the pittance of "services" these heros receive. In a massive conspiracy designed to absolutely not require the wealthy to hand over some of their wealth, the idea is to "LET THEM EAT CAKE!!" Here in Oregon, the plan is to do the following, according to the DD Coalition...


Proposed DD Budget Cuts 2011-13
The following reductions in the DD Program are proposed in the Governor’s Budget:

This budget proposal cuts almost $100 million in total funds out of services to people with Developmental Disabilities.

 These reductions will impact the health, safety, and quality of life for individuals with developmental disabilities and their families.
 Services for people with developmental disabilities have moved from an expensive model of service (Institutions) to more cost effective service models (Support Services and Comprehensive Services) designed to provide the least amount of support necessary for an individual to live successfully in the community.
 Reductions in current services will result in some individuals going into crisis and requiring more expensive services.

Reduction in 24 / 7 Comprehensive Service Rates ($43 TF)
Will impact the quality of care for over 6,500 adults and children. Continued rate reductions and lack of COLA mean that more programs will be unwilling to serve an increasingly complex population of individuals with developmental disabilities.

Eliminate Alternative to Employment Program ($17.1 TF)
Over 2,400 individuals will lose access to day services. This reduction will require increased staffing for residential programs and individuals will lose important services.

Eliminate Family Support ($3.7 GF)
Eliminates support to approximately 1,200 families caring for a child with disabilities. Program provides respite and other disability related supports that assist the child to remain at home.

Cut Fairview Trust by 50% ($7 other fund)
Elimination of funding source that improves health and safety of individuals living at home, keeps individuals out of the 24 /7 comprehensive system, and assists family caregiving by providing home modifications and technology. Violates the promise made at the time of the closure of the state institution to support Oregonians with developmental disabiltiies living in the community.

Eliminate access to Support Services for individuals who are not Medicaid eligible ($6 GF | $15 TF)
Individuals who are not Medicaid eligible currently receive only the General Fund portion of their Support Services funding. This reduction would eliminate access to a Personal Agent who assists them to navigate systems and purchase supports. For many, the loss of both the support service dollars and access to a personal agent will put them into crisis that will result in more expensive services.


Reduce Support Services to individuals 18-21 ($4.7 TF)
Reduction in access to Support Services at a point that youth are transitioning from education may result in more youth and their families going into crisis and requiring more expensive services or a cost shift to education.

10% Reduction in case management and personal agents ($9.8 TF)
Increased caseload and inability to respond quickly to needs of individuals and families. Reduces ability to monitor health and safety. Creates delays in critical eligiblity and other Medicaid processes.

10% Reduction in administration of DD Programs and Support Brokerages ($2.6 TF)
Decreased staff at a time of increased administrative workload and more complex population.

Eliminate the Quality Assurance positions in the County DD Programs and Brokerages ($2.9 TF)
Risk of not meeting the Medicaid requirements for the Home and Community Based Waivers.

Reduce Crisis Diversion ($.7 TF)
Reduces the ability to stabilize a crisis situation quickly and reduce the need for more expensive services.

Reduce In-Home Supports to Children ($.5 GF)
Provides In-Home Support to families who are in crisis and on the verge of seeking more expensive out of home placement for their children. All budget savings will be lost if even a small number of families must give up their children.

Do you wonder why I'm such a frustrated person? Not only do i have a family member (Joseph) with a developmental disability, but I've spent 1/2 of my life trying to ensure their experiences as human beings is equal in quality to the rest of us!

Wednesday, February 09, 2011

If Health Care Is A HUMAN RIGHT

If Health Care Is A HUMAN RIGHT

If Health Care is a human right
For ALL humans NOT to have it is in fact, a crime
If Health Care is a human right
Those who withhold it should be dragged into court
Prosecuted to the full extent of the law
If Health Care is a human right
OUR government is guilty of murder and crimes against
HUMANITY
Hate Crimes against those less fortunate
If Health Care is a human right
There are no excuses
If Health Care is a human right
It MUST be so... should we ask?
I’m tired of hearing the stories
Of reading about those neglected unto death
Of the pain I bare in My Heart for My fellow man
Who has seen My Tears
Waiting and waiting and waiting for their needs
To be met

JOIN ME!
Do not shrink away on this
It is far too important
The MOST important issue
Of these times

Monday, January 31, 2011

"Aint I A Woman?"

I want to end January, 2011 with the words of Sojourner Truth. In the mid 1800's she was one of the bravest women in history...

by Sojourner Truth

Delivered 1851 at the Women's Convention in Akron, Ohio

Well, children, where there is so much racket there must be something out of kilter. I think that 'twixt the negroes of the South and the women at the North, all talking about rights, the white men will be in a fix pretty soon. But what's all this here talking about?

That man over there says that women need to be helped into carriages, and lifted over ditches, and to have the best place everywhere. Nobody ever helps me into carriages, or over mud-puddles, or gives me any best place! And ain't I a woman? Look at me! Look at my arm! I have ploughed and planted, and gathered into barns, and no man could head me! And ain't I a woman? I could work as much and eat as much as a man - when I could get it - and bear the lash as well! And ain't I a woman? I have borne thirteen children, and seen most all sold off to slavery, and when I cried out with my mother's grief, none but Jesus heard me! And ain't I a woman?

Then they talk about this thing in the head; what's this they call it? [member of audience whispers, "intellect"] That's it, honey. What's that got to do with women's rights or negroes' rights? If my cup won't hold but a pint, and yours holds a quart, wouldn't you be mean not to let me have my little half measure full?

Then that little man in black there, he says women can't have as much rights as men, 'cause Christ wasn't a woman! Where did your Christ come from? Where did your Christ come from? From God and a woman! Man had nothing to do with Him. If the first woman God ever made was strong enough to turn the world upside down all alone, these women together ought to be able to turn it back , and get it right side up again! And now they is asking to do it, the men better let them.

Obliged to you for hearing me, and now old Sojourner ain't got nothing more to say.

Thursday, January 27, 2011

My New Calling

I believe there are no accidents in life. A great example came my way this morning. A thread I started on the honesty/dishonesty of President Obama upon listening to his SOTU the other night morphed into something quite different on Facebook. At first I was kinda frustrated about it.

Next thing I know, I got a link from a friend regarding healthcare. It took me to her personal website where I watched her getting shouted down at a town hall in New Jersey where she lives. She is a major voice in the healthcare reform effort in the U.S. As I watched this video I found myself getting that old sense of passion that has been absent in my life for the past few months. Maybe because I don't know as much about what's going on, as I do around disability issues, I've stayed out of the fray on this.

As I was responding to her message that contained the link, I realized that there is a direct relationship between disability and healthcare. I wrote about the many times I've attended Dr. appointments, hospital visits, and low income clinic fiascos. I wrote about what happened to my friend who died prematurely as a result of being denied treatment for colon cancer. It all began to make sense to me.

Now I have something to jump into with both feet! I have a lot to learn about how the healthcare reform effort is working (or not), but I'm a willing student. EVERYONE HAS A HUMAN RIGHT to affordable healthcare, that won't cause them to make choices around seeing a Dr., purcahsing the medications they need, buying food, or paying their bills. It's really a no brainer, but sometimes it takes a while for my brain to work properly.

Wednesday, November 17, 2010

A Trust You Can't Count On

I wrote the following piece and emailed it to 191 people in Oregon and beyond this afternoon. Already getting plent of reponses.

Subject: Fairview Community Trust

David McDonald
2225 N. Emerson St.
Portand, Or. 97217

I'm sending this to as many people as possible who would and or should
understand what I'm about to say. Some of you will probably get this more than
once, and some won’t see it at all. However; I believe it’s important enough,
that I’m willing to face any negativity it may bring my way. With that being
said, please, read on.

It's well beyond time, that a discussion about the future of people with
developmental disabilities in our country, and in the State of Oregon occur. I
won't go into a history lesson about this class of people, but I will say that
they have been discriminated against with little or no consequence for a long,
long, time. Once again, it’s looking like more discrimination is heading their
way. I believe it's also time that we put the myth that they are well provided
for to bed... once and for all.

I decided to write this after receiving an email alert from the Oregon DD
Coalition, which says the State of Oregon is suspending grants from the Fairview
Community Trust. If this is the case, the longer term idea must be that people
with developmental disabilities will either revert back to the days prior to
institutionalization, or will have to figure out some way to remain in the
community without the assistance they need. It's already in the works in other
states, where they're discussing opting out of Medicaid altogether. The Oregon
Legislature should be aware that this is already happening (over a dozen states
according to some accounts), including Texas, Alabama, Mississippi, Washington
and Wyoming. The Department of Human Services should also be aware of this
frightening trend. Shame on both bodies! Are we as a people THAT intent on
fattening the wallets of the uber-wealthy? I have to wonder "what's next?" Are
we headed back to a time of bleeding people to cure them, or debating whether
the Earth is round or not? Perhaps those who think this is a solution to
budgetary shortfalls should remove their roofs for the winter.

Both our national and state governments seem more than willing to sacrifice the
needs of millions to appease a handful of elites. Why? Where is the will of the
people in all this? Who, exactly, believes it's ok (in ANY sense) to deny people
the right to have a home that works well for them? If it's true that "The grants
have been used by hundreds of families and individuals to build ramps, improve
access to bathrooms, and other modifications that have enabled people to live
safely in the community. The agency is taking the money now and will attempt to
eliminate the trust in the next Legislative Session." (as the coalition
claims... and I believe them), it is our RESPONSIBILITY to make sure that
doesn't happen on our collective watch. It's time to stop allowing the
"bullying" of our most Vulnerable citizens, and make laws requiring the most
Invulnerable to pay their FAIR share in Oregon and elsewhere.

In closing, let me say that as a human being living in the State of Oregon,
within the United States of America that I'm not (and neither should any of you
reading this) asking, begging, or pleading that you do the right thing here. I'm
INSISTING on it!

David

Tuesday, November 02, 2010

Paying to Donate

I recently became aware of a need in my community, and decided to jump in and help. We have a charitable organization called the Oregon Community warehouse that gives furniture and housewares etc. to low income people in Portland. I've worked with them before, and was pleased with their responsiveness and willingness to help others. As a case manager I was able to get chairs, tables, beds, and everything you'd need to set up a kitchen.

Today I read somewhere that they are looking for matresses and box springs, probably to give to a homeless family who were coming in from the cold for the winter. I just so happen to have a full-sized matress and boxspring which are in good condition that I no longer need. Rather than trying to sell them (could probably get $30-$40 for the pair) I gave the warehouse a call; leaving a voicemail. 10 minutes later my phone rang, and a woman said she was returning my call. We agreed they'd come by and pick it up on Saturday. Then came the clincher.

She told me it would cost me $20 for them to pick it up.I'm donating something to them and they want me to pay them for doing so! I said; "You're telling me I have to pay you to donate to you? That doesn't make much sense." To which she replied; "That's how we do things now. If we have to pick something up, we charge $20." I told her to forget it. If it's not enough to donate something trying to be a good citizen, I don't think I can work with this new way of doing business. I mean isn't that double jeopordy or something?

Thursday, October 07, 2010

Euthanasia Story

This is a true story that must be told. There are people who have gone to great lengths to suppress the information herein. What I hope to do is compel those reading it to join with me in demanding accountability from the responsible parties. An investigation independent of Oregon’s Protection and Advocacy agency is needed to decide exactly who the responsible parties are.

In early April 2006 I found out that a close friend of mine had stage 3 colon cancer. She had a profound developmental disability and was non-verbal. In order for critical health care decisions to be made on her behalf, she needed representatives who knew and cared about her to gather and interpret medical information and weigh all her options. An Advocacy Team was assembled including myself, two other staff members from her day program (who knew her well), and her Individual Service Plan (ISP) team. This consisted of a management staff representative of the day program provider (who saw her a few times a year), the owner of her foster home (who supervised her direct caregiver) and a county case manager (who was assigned my friend a few months earlier, and didn’t know her). A close friend of the day program representative was brought on board to act as health care representative (who didn’t know my friend prior to her diagnosis). We all met and decided that the case manager would look into what was covered under her health plan, the health care representative would get the medical record and a 2nd opinion. She committed to providing these documents to the team as soon as she got them. I said that I would look into treatment options. Without any of this being accomplished, other than the information I shared about diet and exercise being critical, she was placed in hospice about two weeks later.

Following that initial meeting where I and another Advocacy Team member voiced our opinion that treatment should likely occur, our participation in decision making was apparently no longer desired. Decisions were made without our input and we felt we were being regarded as tokens. Instead, I joined her ISP team as her friend and advocate with no objection from any other ISP team member, and acknowledgement that it was appropriate for me to fill this role. From the beginning I insisted that in order to responsibly represent my friend in making decisions about her health care, we needed to see the medical record, the 2nd opinion, and make sure we all knew what her options were. The rest of the ISP team was more interested in allowing her to die without any medical “interference.” In fact, in early June, without access to any medical record, I was asked by the day program representative to sign a form that would indicate that I agreed to refusing treatment – I declined.

I complained of medical neglect for months while my friend received no treatment. While I was researching diet and exercise, part of the team enrolled her in hospice and cancelled her home health aide; the case manager claimed she had no idea how that happened. While I was complaining of a service plan that didn’t address supports for her condition, the case manager scheduled a meeting to discuss a burial plan. While I complained of a team making decisions without having the medical record to look at, the Health Care Representative took a 10 day vacation to Greece, and the case manager took no action to get the medical record while she was gone. I had already contacted the Protection and Advocacy agency, but received no assistance from them in getting the medical record, even though I had alleged medical neglect. They could and should have gotten the medical record themselves by that time.

A consultation meeting with hospice that involved the entire ISP team only occurred after she had been enrolled in hospice for 2 weeks. This is supposed to happen before making the decision to elect hospice care. This “consultation” consisted of meeting with a hospice social worker and nurse who used what seemed to me like fear tactics to sell their services, including talking about going to a hospital as the indignity of being “loaded” and “hauled off” to an unfeeling and strange place that makes you “wait for hours” for care.

It was obvious that the ISP team would do anything to get me out of the picture and have my friend quietly fade away. My advocacy was characterized by the case manager’s supervisor as “disruptive” and “ancillary” to what the ISP team was doing (damn right), and he began trying to have me removed from my friend’s team. This is in violation of the Oregon Administrative Rule that says that the team can’t be changed when critical health care decisions are being made. He even went to the extent of trying to deceive the Protection and Advocacy agency and keep them out of the loop by changing their email address so they wouldn’t get the cc of his letter calling to remove me. I filed a grievance with the county developmental disabilities program manager. She declined to communicate with me except through the county’s lawyer. I began to receive letters on official county lawyer letterhead. I asked for my friend’s grievance to be heard by a grievance committee, which is provided for in the state’s administrative rules. I was told that only the program manager and her lawyer would talk to me and the meeting would take place in the county lawyer’s office.

At the end of July my friend was taken off hospice but still received no treatment. The reason given for this move was that she wasn’t eligible for hospice because she wasn’t homebound. The fact is, she had been attending her day program 5 days a week and taking the public lift to get there since a week after hospice had begun.

Finally, in early August, the medical record was made available by the Healthcare Rep. This was 4 months after her diagnosis and refusal of treatment by the other ISP team members. No 2nd opinion was included. What the Health Care Representative had been calling a 2nd opinion was an oncology consultation from a second doctor during the same hospital visit. I believe that no 2nd opinion was ever done. The doctor said that chemotherapy is the usual course of treatment and there were concerns about her communication and side effects. I discovered that the case manager and the day program representative had a meeting at the hospital with a social worker and decided then that she was incapable of chemotherapy. At the initial meeting back in early April, this was presented as a fact given to them by the doctors. I found that a hospice consultation was given, along with an in inaccurate reference to her being bed-bound and an opinion about her quality of life and disposition. There was no prognosis of 6 months as they had claimed. I also discovered that she had symptoms involving her intake and weight loss fifteen months earlier. In March an endoscopy had been recommended but wasn’t done.

A nurse from the Department of Human Services was assigned to the case and conversations about guardianship started. I complained to the Protection and Advocacy agency that the team was pursuing an inappropriate guardianship (I feared this was in order to put a “do not resuscitate” order in place). I never heard from the Protection and Advocacy agency what happened around the guardianship. I do know that when my wife went to the ARC to get information about pursuing guardianship ourselves, the ARC called the county developmental disabilities office and told them she had been there.

I had also called protective services to report possible medical neglect, but was told they wouldn’t investigate as long as the Protection and Advocacy agency was already involved. I now feel that the one regrettable mistake I made through this whole thing was in contacting the Protection and Advocacy agency, believing that she needed a lawyer. They never gave a clear answer as to whether or not they would even represent her. In the face of reams of evidence forwarded their way, the P&A did nothing that I am aware of. A well-documented trail of deceit, betrayal, delay and cover up of information continued until I finally left the ISP team, disgusted, in September.

She continued in her day program until late November, when it was announced that the cancer had spread and she was back in hospice. At 10:00 A.M. PST on December 14, 2006 my friend gave in to “pain killers” prescribed while she was on hospice care. I believe my friend was euthanized. I believe this was because she was unable to say “yes” or “no”. She was someone with a huge spirit and a small body. She was someone with a quiet demeanor and a profound developmental disability. In life she was easy to overlook, but the way she died will not be.

On January 10, I submitted a grievance with the P&A regarding their handling of my friend’s case. After not hearing from the executive director in 15 working days, I sent the grievance on to the board’s grievance committee. After not hearing from them after 30 days, I can only assume that my friend’s death and her life don’t merit their attention.

If you are wondering whether I can back up my claims here, the answer is YES. I have documentation that supports this true story and will share it selectively. What I am looking for in sending this out is feedback, advice, and legal assistance to ensure my friend’s death was not in vain. I also need help in getting as much exposure to this story as possible. My email is dawgoregon@aol.com, and I look forward to hearing from folks.

Wednesday, September 08, 2010

Burning Qurans

Ok... Terry Jones has a right to burn the Holy Book of Islamic people to "celebrate" 9/11. And Americans also have the right to kick his ass for endangering them and their loved ones by picking a fight with extremists.

Saturday, August 28, 2010

Still Relevant Today?

I wrote about the fate of New Orleans in the wake of Hurricane Katrina on this blog 3years ago. At the time I was thinking that the people of New Orleans (and the rest of the Gulf Coast) were all but abandoned by the U.S. Government in their greatest time of need. Is it any different today? 5 years down the road??

Six Feet of Water in the City of Evangeline

I’ve been bouncing back and forth between sadness and anger this morning; the 2 year anniversary of Katrina devouring the Gulf Coast. New Orleans was my favorite city in the world. I’m sad and angry because that great city and her people (mostly low income black folks) continue to go largely unattended to by the US Government in the 2 years since. Was Kanye West inaccurate when he proclaimed; “President Bush doesn’t care about black people”? I’d have to say he hit the nail on the head when looking at what the Bush administration has done to put that city back together again.

Did you ever have a chance to visit New Orleans prior to its’ destruction? I went there twice when I was in my roaring twenties. Mardi gras remains as the greatest memory I have of partying in my entire life. But it isn’t just the revelry that has stayed with me since my visits way back when, it’s the all that the Big Easy was.

Po Boy sandwiches, Dixie Land Jazz, Mark Twain, the Muddy Mississip, the street cars, the Doobie Brothers, Buster Holmes’ (red beans and rice), Louis Armstrong, voodoo, coffee with chicory, the Times Picayune, the old Southern homes with their tall ceilings, the Neville Brothers, grits, the list goes on and on. Who’d have thought it could all be wiped out by a storm?

When Randy Newman penned the lyrics to “Louisiana 1927” in 1974, I don’t think he was envisioning what would happen some 30 years down the road. What really gets me is that as far back as 1926 (the Mississippi overflowed its’ banks the year before the Big Flood) it was known that the city would eventually flood beyond repair... it was just a question of when. I’ve pasted those lyrics below, in honor of this sad date in US history.

“What has happened down here is the wind has changed
Clouds roll in from the north and it started to rain
Rained real hard and rained for a real long time
Six feet of water in the streets of Evangeline

The river rose all day
The river rose all night
Some people got lost in the flood
Some people got away alright
The river have busted through clear down to Plaquemines
Six feet of water in the streets of Evangeline

Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away
Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away

President Coolidge came down in a railroad train
With a little fat man with a note-pad in his hand
The President say, "Little fat man isn't it a shame what the river has
done
To this poor crackers land."

Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away
Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away"

Thursday, May 06, 2010

My Most Recent Brush With The Rich And Famous

David McDonald: The only way out of this hole we've been thrown into is non-violent revolution. You ready to take the lead on this Forest?? 8 hours ago

Forest Whitaker: Don't you know it's gonna be alright. 16 minutes ago

David McDonald: When a lower middle class man receives $700+ in medical bills WITH insurance, something's definitely not alright... 14 minutes ago

David McDonald: Forgot to tell you my wife owes $800 for a colonoscopy, and we're chipping away at her 401k now. We did mine in last year. 9 minutes ago

Forest Whitaker :I love your restaurants. 3 minutes ago

David McDonald: Obviously

Thursday, April 01, 2010

My Friend Marvin

Yesterday I attended a Memorial Service for people who had died while living on the streets of Portland. As expected, it was a fairly solemn event, but the turnout was good (100+) and there was a nice feeling of community in the room. You see; when I first moved to Portland 27 years ago, I was homeless for 3 weeks or so, and recall it as some of the worst times of my life... almost.

What made the whole situation bearable for me was one of the first people I met when I arrived. His name was Marvin. Marvin was a man who was a few years older than me, and was a product of the streets for the previous 10 years. He knew his way around. It seemed like every other street person knew him by name. His nickname was Marvelous Marvin, but I don't recall having called him that. His last name was Rohman, and when I remember him, I see Marvin Rohman.

Marvin's survival skills were something he shared with me without hesitation. He taught me where to find cheap/free temporary places to crash out of the weather (I arrived in January). He taught me how to dumpster dive to find tradable or useful objects. He turned me on to various stores where you could buy individual cigarettes. He showed me where to go to get a free meal. He really took me under his wing. Beside being a friendly guy, Marvin also liked me because I played guitar and wrote songs. He could play a little himself, and would pick my brain on what he could do to improve his guitar playing.

Marvin had mental health issues, and was a chronic alcoholic. He occasionally would talk to me about his past, which was not a very happy one. He believed that he was working for Jesus sometimes too. He had a violent side to him that I never witnessed, but could believe. and though we were the same height, he was much more muscular than I was. After being around him for a few weeks, I felt like he could be potentially dangerous, so when an opportunity to get off the streets without him came up, I jumped on it.

For the next 6 months I lived downtown, but with a roof over my head and a job, I'd finally left the homeless ranks. Not Marvin. I'd run into him almost every week, and we would play guitar and talk. He had no desire to leave the streets, and in a short time I sort of became his counselor. I tried to help him become a part of society, but he wasn't interested. He liked his lack of responsibility, and being a totally free spirit.

When I moved out of the downtown area we lost touch. I was being productive, and he wanted no part of such a lifestyle. I did manage to see him one or two times over the next few years. He called me from jail once asking me to bring him a copy of the Big Book of Alcoholics Anonymous. I did that for him, hoping this might assist him in straightening out. No such luck. As soon as he got out of jail he went looking for booze.

After I'd been here for 2 years I met my future wife. Eventually she gave birth to my daughter. Shortly after my daughter was born, I ran into Marvin one more time. I wanted him to see my baby girl, so I invited him over for dinner one night. he showed up with a small gift for both her and my wife. When he saw my daughter, he broke out in an ear to ear grin. I handed her to him (he was sober at the time) and he was delighted to hold this tiny child. I still have a picture of that special moment. He didn't stay for dinner; had some weak excuse as to why. And we hugged goodbye.

A few years later, I picked up a copy of the day's Oregonian newspaper, and was shocked to read that a "transient" man had been discovered murdered under one of the several bridges in Portland. It was Marvin. It seems that he had been camping there for a while, and was attacked by 4 other homeless men who wanted to take his bicycle. Marvin drunkenly refused to give up his bike and was stabbed to death. 4 against 1 are not very good odds.

I was so upset over the murder that I cried all morning long, but as the afternoon rolled around, I found my sadness turning into something quite different. It became important to me that Marvin not be looked at as a "transient". I called a writer at the Oregonian, and made arrangements to meet with her to tell her who Marvin REALLY was. When I met with this writer, I spent an hour or more explaining to her what a great human being he was in spite of his problems. She took copious notes on what I told her, and the next day there was a front page article about Marvin Rohman. She'd managed to get ahold of his mother who lived in the suburbs, and obtained some photographs to use in her story along with the one of him lovingly holding my daughter from our last visit. the picture she painted was not that of a "transient" but of a good man who never got his demons under control.

I'm convinced this is the same story of most homeless people who die on the streets. People who through no fault of their own, become entangled in a lifestyle that no one in America should ever have to experience.

Wednesday, March 03, 2010

Been a While...

When you have a blog, it always is in the back of your head to write in/on it. Having said that (love those hokey cliches), I feel a need to write about some recent happenings in the world of "taking-advantage-over-those-you-can".

Many readers know that I deal with helping folks who have developmental disabilities as both a career and a passion. Fewer know that I've been fighting with the Telecoms in the Portland area on their behalf. I believe these huge corporations take advantage of not only the people I work with, but low income people in general. this pisses me off. Here's why...

LITERACY issues are something they prey on. PRIDE is something they prey on. And LACK OF UNDERSTANDING around how they work is something they prey on. THEY ARE PREDATORS!!

Recently, I told one of these Telecoms I was going to file a complaint with the Oregon Department of Justice regarding their shady business practices. Their response was pretty much; "bring it on!", to which I obliged them. They didn't seem to think that the DOJ would care about such a simple case... but they did!

John Kroger is our Attorney General, and he's made it clear that he wants to know about possible consumer fraud situations, and by all indications, he MEANS IT!

Anyway, we filed a complaint with his office a few weeks back. Turns out, in a letter mailed to my friend, the Telecom now wants to remove $200 from my friend's bill "in an effort to amicably resolve this matter", as they put it. The problem for them is, my friend is seeking justice. My friend isn't interested in "settling" with T-Mobile. She reckons they've been ripping her off for over a year, and I agree.

It certainly didn't help their case when they wrote that the opposite had happened around us trying to prove to them that their service didn't work...hever had. So know we will write them back, (while cc'ing the DOJ) with a major rebuttal, and push back as hard as we can.

Saturday, January 09, 2010

I Am Not One Of The

I am not one of the physically challenged-
I'm a sock in the eye with gnarled fist
I'm a French kiss with cleft tongue
I'm orthopedic shoes sewn on a last of your fears
I am not one of the differently abled-
I'm an epitaph for a million imperfect babies left untreated
I'm an ikon carved from bones in a mass grave at Tiergarten, Germany
I'm withered legs hidden with a blanket
I am not one of the able disabled-
I'm a black panther with green eyes and scars like a picket fence
I'm pink lace panties teasing a stub of milk white thigh
I'm the Evil Eye
I'm the first cell divided
I'm mud that talks
I'm Eve I'm Kali
I'm The Mountain That Never Moves
I've been forever I'll be here forever
I'm the Gimp
I'm the Cripple
I'm the Crazy Lady
I'm The Woman With Juice

copyright 1987 by Cheryl Marie Wade

Sunday, November 29, 2009

The Plight Of A Farmer

Rich people don’t usually write me letters, so you can imagine my surprise when I received a letter from Carol Leuthold yesterday. It was from a mass mailing that must have included my name and address. She wrote that she wants me to join her in voting NO on a tax increase of the rich in Oregon (yeah...right). Though I can’t get back to her today, being Sunday and all, I’ll respond to her tomorrow. What follows is our exchange of letters...
---------------------------------------------------------
Carol Marie Leuthold
Leuthold Dairy Farm

November 16, 2009

David Thomas McDonald
2225 N Emerson St
Portland, OR 97217-3810

Dear David,

Five generations of our family have worked at our Tillamook dairy. It's our life and our business. Milk prices are plunging and it's harder than ever to keep our business afloat. We're worried that the new, permanent tax increases legislators passed in June will hurt our farm and the families it supports. Please join me in voting NO on Measures 66 and 67, which permanently raise business and personal income taxes in the middle of the worst recession since the Great Depression.

Economists estimate these tax increases will cost 70,000 Oregonians their jobs. With entire families out of work, we can't afford taxes that will cost more jobs. I can't vote to send more pink slips to Oregonians.

Legislators say their plan only taxes the rich. They're wrong. We'll all end up paying more for groceries, gas, and other services, and that will impact all Oregonians, especially the poor. Facing higher taxes, small businesses like ours would be forced to lay off workers, reduce wages and benefits, or close their doors.

Worse yet, the higher taxes would be retroactive to January 1, 2009. No money to cover this increase has been withheld from Oregonians' paychecks in all of 2009. Retroactive tax bills will hurt businesses, too.

Despite the bleak economy, Measure 67 would tax businesses up to $100,000 a year, even if they didn't make a profit. This tax increase will make Oregon's corporate minimum (the tax on the sales of businesses that don't make profits) 20 times higher than New York - the nation's highest. The personal income tax increase also adds to business taxes - 66% of Oregonians who will be impacted by the Measure 66 tax increase are small business owners that report their business income on their personal tax returns.

State government has not tightened its belt like the rest of us. We should not send more money to Salem until the state can get its spending under control. It bothers me that the $733 million in new taxes will help fund the $258 million budgeted for state employee salary increases. Instead of pinching pennies like the rest of us, legislators increased overall state spending by $4.7 billion - 9% higher than the previous budget, and raised taxes and fees by almost $2 billion.

Public employee unions say the sky will fall if the new taxes do not pass. I'm here to tell you that the sky is already falling on Oregon small businesses like mine. Even President Obama said in an NBC interview this August, "The last thing we want to do is raise taxes during the middle of a recession."

Help me send legislators a message that voters already have rejected job-killing income tax increases twice before. No means no! Please vote NO on Measures 66 and 67.

Sincerely,

Carol Marie Leuthold
Leuthold Dairy Farm - Tillamook

I worked with Oregonians Against Job-Killing Taxes to share my thoughts with you in this letter.
------------------------------------------------------
November 28, 2009


Carol Marie Leuthold
2425 McCormick Loop Road
Tillamook, OR 97141

Dear Carol,

I just received your letter asking me to vote NO on Measures 66 and 67. The letter was dated 11/16/09, but it came in yesterday’s mail. This means you must have mailed it sometime after November 24th. This is very interesting to me, as on the 24th an article regarding the “myth” of job loss in our state if these Measures pass was printed in Salem-News.com, which you certainly should have read. If you didn’t read this article, I suggest that you do so now.

Your own website leads me to believe that you are in fact a well healed Oregonian who has concerns other than saving jobs. Concerns regarding how you might spend all the money you make. From your website...

“It’s been said that Tillamook is the Switzerland of the United States. Nestled at the feet of the Coast Range and known for its delicious dairy products, the comparison doesn’t make for much of a mental stretch.

If there’s one woman, however, who’s qualified to weigh in on similarities between the two locales, it’s Carol Marie Leuthold.

In addition to being a Tillamook County Creamery Association member farmer, as well as Tillamook County Farm Bureau President, Leuthold and her husband, Dan, have a serious case of the travel bug.

The couple has roamed around the world, including stops in Brazil, Italy, Germany and Alaska. They touch down in Switzerland, Dan’s familial homeland, every four years or so. This past year, the couple rendezvoused there after taking the first separate vacations in their 45-year marriage.

Dan went on safari in South Africa while Carol Marie flew to the South of France and Italy to take cooking classes.”

You should know that we common folks have concerns other than fattening your purse. Concerns such as education for our children, healthcare and housing for our elderly and disabled, and police protection for all Oregonians.

Perhaps you’d be better served by writing a letter to Santa Clause, asking him to keep you rich for another year, and let those of us who actually care about our neighbors move our state forward. May you get exactly what you deserve this Christmas.

Sincerely,

David McDonald
DAWG (Disability Activists Work Group) Oregon

Wednesday, November 18, 2009

Oh Man...

Can you blame people for not trusting a broken system? I know this guy is innocent until proven guilty, but there's already a rumor flying that he admitted to abusing these kids. And the big question is WHY CAN'T STATE AGENCIES INTERFACE WITH EACH OTHER?? One agency denies his application because of obvious concerns, while another approves him. What the hell is THAT about?

Springfield foster parent charged with sex abuse
By Kimberly A.C. Wilson, The Oregonian
November 17, 2009, 7:48PM

Lane County Sheriff's Office

Joshua Thomas FriarA 26-year-old Springfield man is in jail, accused of abusing young boys, including foster children under his care.

Police expect that other victims may come forward now that Joshua Thomas Friar is in custody. Until recently, he was a direct-care service provider at a Lane County treatment facility for severely abused and traumatized children, and a volunteer Big Brother.

Held in jail in lieu of nearly $2 million bail, Friar is charged with four counts of second-degree sodomy and one count each of using a child in a display of sexually explicit conduct and witness tampering.

Arrested Saturday, he resigned, while in jail, from a job he held for three years at Jasper Mountain, 10 miles east of Springfield.

Oregon State Police detectives began their investigation Nov. 10 after one of Friar's former foster children reportedly told an Oregon Department of Human Services caseworker that he was sexually abused while in Friar's care.

Officers served a search warrant and seized evidence at two Springfield residences where Friar lived during the past three years. Caseworkers removed three youths, 7 to 16 years old, who were living with Friar. However, there is no evidence that they were victims of the charged crimes, according to Lt. Gregg Hastings, an OSP spokesman.

Police hope former foster children who lived with Friar at 636 S. 41st Place or 1883 17th St. in Springfield will come forward.

"Our hope is that with the release of the addresses, foster children who have stayed with Mr. Friar in the past at those locations will contact OSP," Hastings said.

Police believe that Friar identified vulnerable juvenile males at Jasper Mountain, then later requested they be placed in his home as foster children. Two have come forward so far, Hastings said, and investigators believe more young boys may have been victimized.

Friar, who previously volunteered with the Big Brothers Big Sisters program, applied in October 2008 to become a foster parent through Jasper Mountain. The center sometimes places young residents in the care of employees trained to foster, supervise and treat emotionally disturbed children, said Dave Ziegler, the center's executive director.

But the application was denied.

"He came to us and said, 'I would like to become a foster parent for Jasper Mountain,'" Zeigler said. "We gave him a trial with one child, and it did not go as we would want it to."

The reservations were not about concerns for the safety of children in Friar's care, Ziegler said.

"There was zero indication of any concern in the area of safety. There were issues with teaching, his choices, his maturity, his impulsivity."

At some point after his application was declined, Friar applied to be a foster parent through DHS. That application was approved.

Officials with DHS would not answer questions about when Friar was certified as a foster parent, what kind of background screening was conducted or how many children the state placed in his home.

"Because of the ongoing police investigation, I am not able to provide additional information," agency spokesman Gene Evans said Tuesday evening.

Anyone with information to help in the investigation is asked to call OSP's Northern Command Center dispatch at 800-452-7888.

Thursday, November 05, 2009

Let's Hear It For The Southern Poverty Law Center!!

November 5, 2009

Dear Friend,

Twenty years ago today, we dedicated the Civil Rights Memorial — the nation's first memorial to the martyrs of the civil rights movement - just a block from where Dr. Martin Luther King Jr. ignited the Montgomery bus boycott.

I hope you will take a moment to remember those who died in the battle for equality and to reflect on how far we've come as a nation and how much more we need to do.

In the two decades since the SPLC built the Memorial, it has become more than a tribute to the martyrs of the movement. It has become a tool for education, an instrument of justice, and a solemn reminder that the march for racial and social justice continues throughout the world.

Because of the Memorial, tens of thousands of schoolchildren have learned about the struggle for human rights — lessons of courage, commitment and sacrifice. The Memorial also sparked new interest in unsolved crimes of the era, and family members of slain heroes have seen their loved ones' killers brought to justice.

On the Memorial's timeline, where the names of the 40 martyrs are inscribed on a circular granite table, designer Maya Lin left a blank space between the first and last entries — signifying that the march for justice began well before the events listed there and it continues today.

Supporters of the Southern Poverty Law Center made the Memorial, and everything else we've accomplished in the past 20 years, possible. I want to thank you for your personal dedication to justice and tolerance. Together we'll work toward the day that — as Dr. King quoted — "justice rolls down like waters and righteousness like a mighty stream."

Morris Dees

Thursday, October 29, 2009

"A Little Levity"

It’s difficult facing the truth about oneself. I ran into this problem last year, but I bravely took it on...

SUNDAY, SEPTEMBER 14, 2008

I'm A Bigot

I just realized that I’m a bigot. All my life I’ve had a hatred of the German language. Not all German people, but their language (and their TV soldiers). It has to go back to when I was a little boy. We used to sit in front of the television watching shows like “Gallant Men”, “Combat”, and “Hogan’s Heroes”, where the good guys were American soldiers in World War 2.

Inevitably there would be German Officers who would come on the screen speaking either in bad English or German. They would bark out orders to their troops or sometimes to the Americans themselves. This was upsetting to me. How dare they shout at an American soldier? Someone working to save Democracy?

Was I influenced by post war propaganda? You bet I was. Did I buy into the idea that German TV soldiers were evil? Uh huh. Did I let those deep seeded feelings turn me into a bigot? Apparently so.

Monday, October 26, 2009

Heeeere's Joseph!

This is a post I put up about my nephew in August 2008. He has autism, and we have to fight tooth and nail on his behalf, so he can have a normal life. His picture's actually on this post on the blog. I don't know how to get it to here...

SUNDAY, AUGUST 24, 2008

Through the Grapevine

Goodwill puts out “a monthly publication for employees of Goodwill industries of Columbia Willamette” titled the Goodwill Grapevine. Back in June my nephew’s case manager there asked me if it was ok to do an article about him. I was a little bit hesitant because I didn’t want him portrayed in any kind of negative light. She assured me that wouldn’t be the case, and said she’d do a story for the August edition.

He came over for Sunday dinner today and brought a copy of the newsletter with him. There’s a picture of him on the cover which is very cool. However; the back page is where his “story” is told, and I think it sucks. I don’t know who wrote this piece of trash, but they ought to be hung by the toes.

It starts out by saying; “The myriad of workplace sounds confuse him”. They don’t know that. He may have been confused because the situation was new. It goes on to say “The fast and efficient movements of employees make him anxious”. How can they write that? He certainly has never told anyone that. As I read I’m picking up on a vibe that they’re trying to make his disability look much worse than it is. Next they go on to say he “suffers from autism, a severe brain disorder”. As far as I’m concerned, the only thing he suffers from are the fools who wrote this drivel. “Some autistic individuals even feel terrible pain when they hear certain sounds. And sometimes the disease forces individuals to withdraw into their own world to avoid dealing with the sounds of the real world”. That may be true for some people with autism, but it’s not Joseph’s m.o. by a long shot. And...somebody needs to tell the writer that autism is NOT A DISEASE.

The next paragraph starts out by saying “Yet, somehow Joseph found the courage to move beyond his disorder”. Is this hyped-up fluff, or what? Courage? He’s as autistic now as he was when he started at Goodwill. He likes being autistic. I like his autism. The writer of this article ought to go back to school to gain an understanding of what disability is and isn’t. That’s the biggest reason he's bustin’ out of Goodwill.

Saturday, October 24, 2009

What Do You think?

It may sound cold to some, but here’s what I believe.

THURSDAY, JANUARY 17, 2008

Commercializing Martin Luther King's Birthday

At Thanksgiving we gather the homeless and hungry for turkey dinners. We make sure they have a hot nutritious meal...on that one day of the year. I tend to believe it’s more for the community at large than those being fed. It relieves guilt we may have for not taking care of these folks year round.

I see the same sort of dynamic growing more each year around Martin Luther King’s birthday. Next Monday there will be breakfasts honoring civil rights champions all over the country. There will be celebrations and TV broadcasts. There will be quotes and speeches about how great Dr. King was. There will be volunteer opportunities to paint, restore, clean up, and care...on that one day of the year.

I’m not buying any of it. I’m quite certain that Dr. King would not buy it either. He was much more of an in-the-trenches warrior than a celebrity. He was a year round activist who was more concerned with results than pomp and circumstance.

So I choose to have a day of fasting and praying on Monday. Something very low key. I’ll set my sights on what I can do when Tuesday rolls around.

They Call Me Egg Face

The other day I wrote about a legislative "coffee" happening in my part of town in a post titled "We Interupt This Project". I missread the dates, THINKING it had already happened earlier that day! Later I wrote an email to my State Senator exxpressing my disappointment that it had come and gone without my knowing about it.

Late yesterday he got back to me, telling me I was a month early on my critique of the outreach done. Oops! I WAS WRONG. Guess it's important to have the facts nailed down before complaining. My bad!

Friday, October 23, 2009

On New Orleans

Honestly, I was unaware of the emotional impact this project would have on me when I began. Each time I browse through the posts, I find something that brings me to tears. A little over 2 years ago I wrote about New Orleans, and what has NOT happened since Hurricane Katrina swept through in 2005. It still breaks my heart...

WEDNESDAY, AUGUST 29, 2007
Six Feet of Water in the City of Evangeline
I’ve been bouncing back and forth between sadness and anger this morning; the 2 year anniversary of Katrina devouring the Gulf Coast. New Orleans was my favorite city in the world. I’m sad and angry because that great city and her people (mostly low income black folks) continue to go largely unattended to by the US Government in the 2 years since. Was Kanye West inaccurate when he proclaimed; “President Bush doesn’t care about black people”? I’d have to say he hit the nail on the head when looking at what the Bush administration has done to put that city back together again.

Did you ever have a chance to visit New Orleans prior to its’ destruction? I went there twice when I was in my roaring twenties. Mardi gras remains as the greatest memory I have of partying in my entire life. But it isn’t just the revelry that has stayed with me since my visits way back when, it’s the all that the Big Easy was.

Po Boy sandwiches, Dixie Land Jazz, Mark Twain, the Muddy Mississip, the street cars, the Doobie Brothers, Buster Holmes’ (red beans and rice), Louis Armstrong, voodoo, coffee with chicory, the Times Picayune, the old Southern homes with their tall ceilings, the Neville Brothers, grits, the list goes on and on. Who’d have thought it could all be wiped out by a storm?

When Randy Newman penned the lyrics to “Louisiana 1927” sometime around 1990, I don’t think he was envisioning what would happen some 15 years down the road. What really gets me is that as far back as 1926 (the Mississippi overflowed its’ banks the year before the Big Flood) it was known that the city would eventually flood beyond repair... it was just a question of when. I’ve pasted those lyrics below, in honor of this sad date in US history.

“What has happened down here is the wind has changed
Clouds roll in from the north and it started to rain
Rained real hard and rained for a real long time
Six feet of water in the streets of Evangeline

The river rose all day
The river rose all night
Some people got lost in the flood
Some people got away alright
The river have busted through clear down to Plaquemines
Six feet of water in the streets of Evangeline

Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away
Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away

President Coolidge came down in a railroad train
With a little fat man with a note-pad in his hand
The President say, "Little fat man isn't it a shame what the river has
done
To this poor crackers land."

Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away
Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away"

Thursday, October 22, 2009

"What It All Comes Down To..."

On May Day 2007 the disability community declared it to also be known as “Disablism Day”. The term “disablism” refers to the differences in the lives of folks with disabilities and their non-disabled peers. It’s also a call to the non-disabled community to find it within themselves to stop treating people with disabilities “differently”. I remember feeling truly inspired as I wrote this next post.

TUESDAY, MAY 01, 2007

Disablism Day Reflections

Due to some pressing matters I haven’t been blogging much lately. I’ve been holding out and holding on... to hope. Hope that people will awaken to the fact that civil and human rights are continually violated in the US of A daily in the personhood of people with disabilities. Preaching to the choir? I hope not.

I was talking to a guy last week about why I am the way I am. There’s a part of me that places principles before relationships. I figure that I have a limited time here on Earth, and I want to affect as much positive change as I can before my life is over. It’s almost to a point of obsession. If that means people not liking me because I don’t whisper or play nice, so be it.

1.) It sucks that a smaller group of people control the government, the resources, the media, and the decisions in the name of the larger group. Why aren’t more people up in arms??

2.) YOU CAN defend a woman’s right to choose and abhor the euthanasia of innocent people.

3.) YOU CAN be a progressive person and believe that life is sacred and should be treated as such.

4.) BEST PRACTICE is ALWAYS BEST PRACTICE until BETTER PRACTICE becomes FACTUAL.

5.) Incremental change is for the fearful. Immediate change is for the brave.

6.) Bargaining and rationalizing is a foreign concept to TRUTH.

7.) I’d rather have someone speak to me incorrectly and treat me right, than to have someone speak to me correctly and screw me. (That seems to be the latest trend)

8.) The truth will make you sick BEFORE it sets you free.

Wednesday, October 21, 2009

A Novel Approach To Writing

Since I’ve written 445 posts on my blog, AND I’m kinda lazy by nature, I’ve decided to do a “greatest hits” thing for the rest of October. My plan is to take older posts from the blog and push them up to “current” status. Although this feels peculiarly like watching old episodes of Lawrence Welk, where they tell you what year it’s from, It’s a nice way to celebrate some of what I consider my best posts. Here’s a post from when my blog was pretty new...

TUESDAY, JANUARY 30, 2007

What's Up With Disability Awareness?

What’s up with disability “awareness” demonstrations anyway? I’m talking about those exercises designed for school kids to “experience” what it’s like to live with a disability. For example, kids are encouraged to put two-sided tape between their fingers to see how their fingers stick together and how hard it is to pick up objects or to write. Or they are made to put a rubber ball between their knees then try to walk or run to “experience” a physical disability. Then they are asked to read a page of words that are printed backwards or with the letters jumbled around to “simulate” dyslexia. Probably the most insulting, they take turns putting on funny-looking masks and “experience” what it’s like to be laughed at. And my all-time favorite, they stuff marshmallows into their mouths and try to say a sentence to “simulate” a speech impairment.

All of this is supposed to create better understanding and empathy for their schoolmates who have disabilities. These exercises are so short-sighted and insulting that I believe they do more harm than good. The obvious is that they are designed to highlight differences, not similarities. In highlighting these differences, they sum up the experience of disability as performance deficits in areas where people struggle, but give no opportunity to see people with disabilities as individuals who possess a broad range of unique talents and abilities beyond these areas. Besides, what about the myriad of assistive technologies, equipment and adaptations to the environment that people use to accomplish these tasks at performance levels at or above what people without disabilities can do? These demonstrations also give kids the impression that all people with disabilities can be lumped into one group that experiences these things in the same way. They focus on the disability as the problem, but do nothing to show the unnecessary environmental barriers and prejudice in society that people with disabilities encounter daily. They actually involve “real” people with disabilities who take others through these degrading and misleading exercises. And they are focused on the wrong audience.

What’s needed is a demonstration for ADULTS without disabilities where they are forced to sit through a meeting with a case manager they’ve never met before asking for details about the likely peculiar “behaviors” they exhibit. They would experience the indignity of this 3-hour meeting during which every idea they present for assistive devices, adaptations or personal support services is met with a “No, it's not on our funded priority list.” They would be joined by a “vocational specialist” who would respond to every idea they present for appropriate workplace supports with “I don’t think ‘CARF’ will allow that goal” or “none of the other 'participants' are doing that, so we don’t want the others to think we’re giving any ‘special’ favors.” They would be told that a performance goal that targets 90 or 100% is not allowed, since it’s outside the standard “guidelines” that expect that the majority of people with disabilities won’t perform at that level. After the meeting they would be asked to sit and wait for their ride to pick them up. It will be at least a 30-minute wait, and it will arrive 10 minutes late. They would board the van and experience being driven around for 2 hours on a circuitous route that picks up several other people before arriving at their destination, which would normally be a 15 minute drive. Their destination? A dinner with their family, which was planned for 5 PM, but of course they don’t arrive until well after 6.

Now that’s disability “awareness.”

Friday, October 16, 2009

How To Make People Lie

Want to have some fun during this Halloween season? I’ve come up with the perfect trick to pull on “important” people, that will surely make you smile. It goes like this.

You simply approach any government type(s), rich people, or famous person you know, and ask them if they’ve been vaccinated against the H1N1 virus. Because they’re most likely NOT on the list of high priority folks for the vaccine they will HAVE TO lie when they answer “no”.

Don’t ask about any other person than themselves. If you do that they’ll say that HIPPA rules prevent them from telling you, but they’ll be stuck as far as themselves.

Thursday, October 15, 2009

Eugenics Afoot?

Yesterday I received a letter from the Oregon Department of Human Services around being vaccinated for the H1N1 virus. Because I’m a “Health Care Worker”, they feel it’s important that I get this vaccination, so I won’t pass the virus on to those I work with. They also expressed concern that if I were to get sick, my folks wouldn’t get the help they need. In other words... I’m “high priority”.

Shortly after reading the letter, I called my Dr. to set up a time to get vaccinated. As usual, I got her voicemail instead of a human. I left a clear message about the letter, and the need to get the vaccination ASAP. A few hours later I got a call from her assistant. She told me that they don’t have the adult vaccine yet, and that at this time they are only vaccinating people who are between 5 and 24 years old. She also told me to check back on Monday.

This whole situation is whacked! The letter also says that people over 65 are no longer a high priority group. The letter states; “It appears that many over the age of 65 have some immunity to this virus and are not in the first priority group”. “Some immunity”? What the hell is that?? I smell Eugenics. Senior citizens and people with disabilities seem to be taking a back seat to those who are already healthy for the most part. I also hear they want to do away with “aggressive treatment” for seniors who get sick, and stick them in Hospice to die. Hmmm... what’s next??

Tuesday, October 13, 2009

Homelessness In Portland

In Portland, as in other US cities, homelessness is a serious problem. Here, we have a 10 year plan to eradicate homelessness. Half way through the 10 years we have some "results" on the effort. Here's an update...

Half Way Through Portland's 10 Year Plan To End Homelessness
BY ROB MANNING

Portland, OR October 12, 2009 9:59 a.m.

Oregon is struggling through a deep recession, which is blamed for forcing hundreds, perhaps thousands more people into homelessness.

In Portland, housing services are undergoing a major restructuring.

In OPB’s second story in our series, “No Place to Call Home,” we look at the chronically homeless.

As Rob Manning reports, Portland’s nationally-recognized Ten Year Plan to End Homelessness is expected to keep the same focus for the next five years, that it had over the first five years.

The joint Portland-Multnomah County Ten Year Plan to End Homelessness first saw the light of day in December 2004.

City commissioner Erik Sten rolled it out.

Erik Sten: “I think most people laugh when the government comes out with a plan that says ten years from now, we hope to end homelessness – but we’re doing it anyway because we believe it could happen. It could happen if we all do the work we want to do.”

The event drew the Bush Administration’s top homelessness official, Philip Mangano.
Phillip Mangano: “We already knew that chronic homeless people – the ten to twenty percent of the homeless population, consumed more than half of all the resources we spend on homelessness. But recent studies show that this is a disproportionately expensive population in mainstream healthcare.”

In the first two years of the plan, OPB tracked a handful of chronically homeless people who received shelter and services through the Ten Year Plan.

People can be stuck on the streets for a variety of reasons, often related to mental illness or drug problems.

Steve Powell was homeless because of a physical disability. Powell’s rheumatoid arthritis means he can’t use his hands to work.

He spent 15 years living outdoors. Much of that time, he was camping on a hill in Portland’s Forest Park. On a drizzly morning four years ago, Powell had just moved into an apartment, and was settling into his new life.

Steve Powell: “It’s nice to look out there and know I don’t have to get in it. Like up there in the hills in my tent, sometimes I’d be cuddled up in some blankets, just to stay warm and now, I can sit back and look at it, instead of cuddled up under something.”

Four years later, Powell still enjoys living indoors.

Steve Powell: “Yes, I’m still here, and unless something happens, I’ll stay here, you know.”

The 58 year-old Powell has two homeless friends, he refers to just as Mike and Mark, who come by occasionally. Powell says Mike wants to move inside.

Steve Powell: “As far as Mark, uh, I have no idea what he has in his head. I mean if I was him, I’d be getting off that hill because he’s getting visited by the rangers and the police, and he’s going to wind up in jail.”

Powell says he might’ve wound up dead, if he’d stayed outside. He’s heard that falling trees struck his favorite camping spot in a recent storm.

The Ten Year Plan has housed more than 2000 chronically homeless people like Steve Powell in the last four and a half years.

Powell might still be homeless if not for one of the priorities of the Ten Year Plan: permanent, subsidized shelter.

But building those places is expensive and complicated. To understand just how hard it is, let’s go back to where the Ten Year Plan was announced: the musty lobby of an old Ramada Inn in Portland’s Rose Quarter.

Again, former federal housing czar, Phil Mangano.

Phil Mangano: “And here – right here, in the building, the promise of the future isn’t it? Permanent housing for the homeless at Rose Quarter Housing.”

Ed Blackburn with the housing and treatment non-profit, Central City Concern, was optimistic in 2004, that the Ramada would soon become Rose Quarter Housing.
Ed Blackburn: “So we hope to start that renovation and have it ready, I think some time in late summer for occupancy. It may be a little sooner than that, or a little later than that.”

Fast-forward almost five years, and Rose Quarter Housing is still a construction zone, with hard hats required. Ed Blackburn says there are two big reasons the project has taken so much longer than expected.

One is best demonstrated on the top floor. It’s been completely gutted.
Ed Blackburn: “The leaks were coming through the roof, down into the walls, and because they had so many layers of vinyl wall paper on it, it wasn’t leaking out, you didn’t see it, until you started tearing the walls apart. And once you found that, we had to replace the walls, because they’d had too much water in them for too long.”

Those construction problems became even costlier, when problem number two surfaced last year. The financial meltdown that forced hundreds of Oregonians into homelessness, also tightened up the credit needed to finish housing projects.
Now, some of the rooms on a lower floor are finished. Ed Blackburn can stand on the new tile floor and admire a river view and the fall colors of Portland’s west hills. Blackburn says Central City’s five-year slog to turn this hotel into housing mirrors the struggles of the Ten Year Plan.

Ed Blackburn: “It’s not easy ending homelessness and this building wasn’t easy to keep financed. We found all things we weren’t expecting when we started tearing things apart. We worked real hard to keep things together, but it’s moving. And there are going to be setbacks but you keep moving. It’s kind of like a metaphor for the whole Ten Year Plan, this building.”

Ultimately, Blackburn agrees with city officials who don’t see much need to change the Ten Year Plan, halfway through. Portland’s new housing bureau director, Margaret Van Vliet, says the Ten Year Plan might need tweaking, but not a fundamental change.

Margaret Van Vliet: “Are we exclusively looking at the chronically homeless, or primarily looking at chronically homeless versus the newly homeless, because of the explosion in the number of newly homeless, to some extent, we’re still reacting.”

Blackburn says even though the economy has made matters worse, the Portland area is better off, thanks to a countywide focus that started when the Plan to End Homelessness was still just an idea.

Ed Blackburn: “You know that metaphor of water coming into the bathtub, and you’ve got a spoon, but it’s coming in faster than you can get it out, so the tub keeps filling up. Well, we got a big bucket about six years ago, and we started getting out the water faster than the homeless population was increasing. But now that spigot’s been turned on higher. So we’re going to have to work harder.”

Meantime, folks like Steve Powell, are grateful to have a bath tub to come home to – even as he thinks about his friends, who don’t.

Saturday, October 10, 2009

Who's Dying From H1N1?

I was afraid this might be the case...

H1N1 Striking Children With Disabilities Hard, Officials Say

By Michelle Diament
October 9, 2009

The number of children who have died from the H1N1 virus is “increasing substantially,” health officials said Friday, and children with disabilities and underlying medical conditions appear to be hardest hit.

Already 76 children have died from H1N1, or swine flu, this year and the flu season is just beginning. Flu season traditionally lasts until May.

The number of deaths is especially striking given that fewer than 90 children died in each of the last three years from seasonal flu.

Most of the children who have died from the H1N1 flu strain had disabilities or underlying health conditions, officials at the Centers for Disease Control and Prevention said Friday.

“The majority of children that we have information on had an underlying disease,” according to Anne Schuchat, head of the CDC’s National Center for Immunization and Respiratory Diseases. “Among children, muscular dystrophy and cerebral palsy are quite prominent.”

These findings are consistent with a CDC report released in September, which indicated that two-thirds of children who died from H1N1 during the spring and summer had a chronic illness or developmental disability.

Officials say they are hopeful that the threat of the virus will begin to subside as the swine flu vaccine becomes more readily available, but they do expect more deaths in the coming weeks.

The first doses of the vaccine were administered this week, but only a nasal spray version was available. The nasal spray contains a weakened live version of the flu virus. An injection version of the vaccine, which does not include the live virus, is expected next week.

Individuals with developmental disabilities including cerebral palsy, intellectual disability and developmental delay are considered to be at high risk for H1N1, especially if they have respiratory issues as well. Those who are at high risk are first in line for the vaccine, CDC officials say, but are advised to wait for the injection version.

Thursday, October 08, 2009

What Do You Think?

There's a lot of arm-chair quarterbacking going on in Portland about what should be done with the Police Officers who allowed James Chasse to die from injuries while in their custody. My take, is that they should, in fact resign. Guess we'll see what happens. From the Oregonian newspaper...


Breaking News, Portland »
Agencies to call for resignation of Portland officers involved in Chasse's arrest
By Maxine Bernstein, The Oregonian
October 07, 2009, 6:02PM

Representatives of the Mental Health Assocation of Portland, along with three other agencies, tomorrow are scheduled to call for the resignation of the three officers who had contact with James P. Chasse Jr. before his death in police custody.

Speakers from the Mental Health Association of Portland, along with members of Disability Rights Oregon, the Albina Ministerial Alliance, and Mental Health America of Oregon, are scheduled to speak out at 9 a.m. at the offices of Disability Rights Oregon.

"Our city administrators and leaders have demonstrated they lack the political will to enforce accountability on this issue," said Jason Renaud, a volunteer with the Mental Health Association of Portland. "We have more confidence that the officers will voluntarily resign than that the City will terminate their employment. And we hope they do."

The groups will be calling for the resignation of Portland Sgt. Kyle Nice, Officers Christopher Humphreys and Bret Burton.

A Multnomah County grand jury found no criminal wrongdoing by the officers in Chasse's death on Sept. 17, 2006, and Chief Rosie Sizer found only Sgt. Nice violated bureau policy that night, by not ensuring that Nice had Chasse taken to a hospital after he was stunned by a Taser.

Police said the officers thought Chasse was urinating in the street and stopped him, then chased him and knocked him down and struggled with him.

Chasse, 42, who had schizophrenia, died after he was taken into custody from broad-based blunt-force trauma to the chest. An autopsy showed he suffered 26 breaks to 16 ribs, some of which punctured his left lung; 46 separate abrasions or contusions on his body, including six to the head; and 19 strikes to the torso.

The city is preparing for a March trial in federal court resulting from a civil lawsuit Chasse's family filed. It accuses officers of excessive force and the police and paramedics of failing to provide adequate medical attention. Multnomah County this summer settled its part of the lawsuit for $925,000.

Sgt. Scott Westerman, president of the Portland Police Association, said he's disturbed Renaud continues to focus on these three officers, because he said any officers would have taken the same action that night, based on their training and police policies.

Saturday, October 03, 2009

How And Where The Poor Survive In Portland

By Anna Griffen of the Oregonian

Section 8 acceptance percentages in the metro area
The percentage of landlords in communities in the four-county metro area who accept Section 8 tenants:
1. Northwest Portland: 41 percent
2. Hillsboro/north of U.S. 26: 30 percent
3. Aloha: 37 percent
4. Beaverton:35 percent
5. Downtown Portland: 16 percent
6. Southwest Portland: 18 percent
7. Tigard/Tualatin/Sherwood: 29 percent
8. Lake Oswego/West Linn: 33 percent
9. Wilsonville/Canby: 31 percent
10. Oregon City/Gladstone: 63 percent
11. Milwaukie: 53 percent
12. Clackamas: 42 percent
13. Inner and central Southeast Portland: 32 percent
14. Outer Southeast Portland: 40 percent
15. Troutdale/Fairview/Wood Village/Gresham: 44 percent
16. Outer Northeast Portland: 57 percent
17. Inner and central Northeast Portland: 45 percent
18. North Portland/St. Johns: 64 percent (where I live)
19. West Vancouver: 50 percent
20. East Vancouver: 46 percent

--Source: Metro Multifamily Housing Association


--------------------------------------------------------------------------------

Portland law forbid landlords from discriminating on the basis of just about everything: You can't refuse to rent to someone because of their gender, sexual orientation, religion, race, political philosophy or age.

But every day, the classified ads and Craigslist postings are cluttered with examples of the one kind of renter discrimination that remains perfectly legal.

"3 bedrm, 2 bath, good schools. No smoking, no section 8."

"1 bedroom, 2 blocks from busstop, big backyard. No pets, no sct 8."

"Cute 2 bedroom, one bath. Great location. Sorry, no Section 8."

Section 8, for those of us lucky enough to know how we'll pay the bills next month, is a federal voucher program that offers poor people government assistance with most of their rent.

Benjamin Brink/The OregonianJill Riddle, at the Hollywood East apartments on Northeast Broadway, runs the Housing Authority of Portland’s rent assistance department and oversees Section 8 vouchers. “We’re trying to show landlords that this is a new Section 8,” she says. The Hollywood East complex is among the Housing Authority’s public housing options for seniors and people with disabilities.In Portland and east Multnomah County, many landlords -- especially the bigger rental companies -- will not accept Section 8 tenants. Apartments are especially hard to find the closer you get to the central city -- in other words, the place where many of the jobs are. Housing advocates want more landlords to accept the vouchers and are working to rehabilitate the program's shabby reputation.

"Landlords don't treat you like they treat other people," says Anna Avalos, a single mother of three teenagers who is looking for Section 8 housing in outer Southeast Portland. "Most of them do not give you the time of day, and the ones who do try to take advantage of you financially because they figure you don't have anywhere else to go."

Last week she was desperate enough to post an ad on Craigslist, essentially begging for help:

"i am a single mother of three...i have section 8 and not the best rental history but not the worst...i have always paid my rent on time...i have 2 weeks left to find a place or my voucher exspires..then we will be on the street..i already am staying with family and friends..i would be willing to work out any legal deals if needed."

For the folks at the Housing Authority of Portland, the quasi-public agency that coordinates affordable housing in the city, this is the nightmare scenario. They've been holding classes for property owners and managers, explaining the benefits of Section 8 and trying to answer questions and address complaints.

Resources
For more information about the Housing Authority of Portland and the Section 8 program, visit www.hapdx.org"We're trying to show landlords that this is a new Section 8," says Jill Riddle, who runs the Housing Authority's rent assistance department and oversees Section 8 vouchers for 8,000 people at any particular time.

The vouchers often represent a first step toward stability. They're intended to deter ghettos and help deconcentrate poverty, to give low-income families a chance to live in middle-class neighborhoods with better schools and more work possibilities. In Portland, demand for the vouchers is enormous; the waiting list just to be considered runs 12 to 24 months.

But many landlords don't want to be tied into the mandatory one-year lease or to have to go to court to evict tenants who violate the terms of their contract by making too much noise or sneaking in pets. Landlords want to set their own rent rather than being forced to charge the "fair market rate," a government-set standard based on the average rent in an area. They worry about hurting property values.

And Section 8 tenants, landlords say, tend to be more trouble than people who pay the rent out of their own pockets.


Greg Knakal"A lot of property owners feel their homes are going to get damaged if they rent them out using Section 8," says Greg Knakal, this year's president of the Metro Multifamily Housing Association, a coalition of landlords.

Landlords are even blunter off the record: They talk about Section 8 tenants leaving behind full and backed up toilets, carpets stained with who knows what, trash piled to the ceiling.

"It only takes one bad experience," says Knakal, whose Princeton Property Management rents approximately 8,000 units around Portland and on the coast.

"For a long time, there were no repercussions if you rented a property and trashed it. It seemed like people who got in trouble would just get a slap on the wrist, and then go and reapply for the vouchers. No price to pay. That doesn't really make you want to take part."

During last year's City Council campaign, then-candidate Nick Fish said he would push to change the law to force Oregon landlords to take Section 8 vouchers. New York, Los Angeles, San Francisco, Chicago and Washington, D.C., all bar property owners from refusing, though landlords can still reject potential tenants for other reasons, such as criminal records.

Fish, who won and runs the Portland Housing Bureau, now says he wants to see whether efforts to fix the program's reputation and engage landlords work before trying to make the vouchers mandatory. (If nothing else, that's smart politics: Persuading the Oregon Legislature to force Section 8 on property owners would be extremely difficult given the fundraising power and lobbying prowess of real-estate developers.)

Instead of a full-frontal assault, Fish has organized a task force to study ways to make Section 8 work without provoking landlords.

Fredrick D. Joe/The OregonianCity Commissioner Nick Fish, who runs the Portland Housing Bureau, says he wants to see if efforts to fix the Section 8 program’s reputation work before trying to require that landlords accept the federal vouchers. Fish raised the issue when he was running for City Council. "This program is going to be most successful if landlords and government and nonprofits are all working together," he says. "We've got to do a better job showing landlords that this is a new Section 8 program, that the things they worry about have been addressed and the 'tenant from hell' doesn't exist anymore."

The Housing Authority of Portland has set up a special fund to pay for apartments that get damaged. It's hired new staff to work directly with landlords and speeded up the inspection process required before a Section 8 tenant moves in.

It's also working more closely with Section 8 tenants, both to hold miscreants accountable and help what it says are the vast majority who take care of their properties, stay employed and save money so they won't always need government help.

The economic crisis has helped sway landlords. A year and a half ago, when times were good, landlords generally looked at Section 8 renters as riskier bets than other tenants and figured they could charge whatever they wanted. The percentage of vouchers returned unused rose as high as 30 percent. (People using them usually have up to 120 days to find housing. The vouchers don't cover security deposits or utilities.)

"These days the voucher is more of a sure thing," Riddle says. "Even if the person who has it loses their job, you know they have a safety net. We are going to make sure the rent gets paid."

Still, changing the overarching image of Section 8 is going to take a long time. It's still hard to find landlords in more desirable, competitive areas who participate. A recent study by the Metro Multifamily Housing Association showed that 16 percent of downtown property owners accept Section 8 vouchers. That number increased steadily the farther from the central city you go, to 64 percent in North Portland and 57 percent in outer East Portland.

To a degree, geography doesn't matter to someone desperate for shelter. But the farther from work you live, the harder it can be to show up on time day after day, particularly if you're juggling child care needs or have a disability.

"When I first got here, I was shocked at the number of classified ads that explicitly said, 'No Section 8,' because, really, that's discriminatory. You're telling someone, 'You are poor, you have hit a financial speed bump, so I am not going to even consider you,'" says Riddle, who moved to Portland from a similar job in Salt Lake City two years ago. "If you look at the paper now, it's better. But we still have a lot of hard work to do."

Thursday, October 01, 2009

Is This Really News?

As I've been saying for a long time; if you have a disability, watch your back. I found this report on WIBW.com out of Kansas...


WASHINGTON (CNN) -- People with disabilities are 50 percent more likely to be victims of violent crimes than are people without disabilities, according to a government study released Thursday.

The first national study of its kind found that a wide range of disabled people -- including blind, deaf, developmentally disabled, and others with physical and mental limitations -- were victims of assaults, rapes and robberies in 716,000 cases in 2007.

The study by the Justice Department's Bureau of Justice Statistics said instances of violence against disabled people occurred overall 1.5 times the rate of those without disabilities, but the numbers varied by age group.

The most vulnerable groups were disabled people ages 12 to 19 and 35 to 49, for whom victimization occurred at nearly twice the rate of non-disabled persons.

Michael Rand, chief of victimization research for the Bureau of Justice Statistics, did not speculate on the reasons for the findings.

"It's hard to say," Rand said. "We didn't try to get at motivations." A co-author of the study, Rand said many of the crimes were committed by people who did not know their victims. Forty percent of the crimes against disabled male victims were committed by strangers, versus 45 percent against those without disabilities.

The difference for females was greater: 34 percent of disabled females were victimized by strangers versus 24 percent for women without disabilities.

The study found that people with cognitive disabilities -- such as mental retardation, developmental disabilities and cerebral palsy -- represented the largest group of victims.

Simple assaults accounted for about two-thirds of the crimes against disabled people in the study, which tallied 476,000 simple assaults, 114,000 aggravated assaults, 79,000 robberies, and 47,000 rapes or sexual assaults.

I Thought This Might Be Coming

A few days ago I posted the words to a Public Service Announcement put out by a group that calls themselves "Autism Speaks". I mentioned how this PSA had pissed off a lot of people. Below is a letter written to the donors, supporters, and sponsors of "Autism Speaks". Thought I'd post it here in case others want to sign on. DAWG has...

The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization's latest offensive and damaging Public Service Announcement, "I am Autism". If you are an organization that would like to sign on to the letter, please e-mail ASAN at info@autisticadvocacy.org before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN's upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at info@autisticadvocacy.org Thank you for your support and please feel free to distribute for additional signatories.

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Regards,

National:

The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)

Not Dead Yet
The Bazelon Center for Mental Health Law

Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2
International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

Local and Regional:
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana