Letters to the Editor - October 2005

I read the article in the most recent Access Press (September 10, 2005) entitled “An Ethical Dilemma,” and was happy to learn there will be a protest scheduled at the conference at the Hyatt Regency in Minneapolis as Michael Schiavo, and others with no morals concerning the right to life, are scheduled to be honored as heroes by the promoters of physician-assisted suicide and euthanasia.

I’d like to know, however, where the protesters were when the movie, “Million Dollar Baby” came out. I had heard the movie got best picture of the year last year, so took my companion, who has one of those serious diseases that fall under the umbrella of the MDA Association, to the film, not knowing in advance what it was about (assisted suicide honored).

After we saw the movie, both of us were speechless, and I’m sure my boyfriend must have been horrified. Not only must he deal every day with a terrible disease, now the motion picture industry was promoting the decisions of people who think it is okay to just give up. My companion must have thought, too, along with countless others, that their lives, their courageous example, their will to live, are not worth anything and then, after seeing this movie, depression, despair, and apathy are also allowed to enter their lives.

Even though I was emotionally involved, I did manage to write a few angry letters about “Million Dollar Baby” and got upset every time some flippant, beautiful, young newscaster here in the Twin Cities praised the movie. Since the movie starred Clint Eastwood, and because he also directed it, this may be why I only received one letter that supported my viewpoint. Somebody from a newspaper wrote and said that there was not much I could do now because the movie had already come out, but that I could tell people not to buy the Video or DVD.

Hope you are successful at the protest on Friday, September 23, 2005, a conference that is being sponsored by Hennepin County Medical Center to celebrate physician-assisted suicide and euthanasia. I also hope your efforts are highlighted by the media. The groups sponsoring this conference are not heroes—they are cowards.

They are people who would never volunteer to teach me how to use this computer, who would never buy season tickets to the theater, orchestra hall, and sporting events and take me along. They would never help me get back into the church after feeling alienated or help me overcome the effects of depression (big time). These are just a few of the items my boyfriend, who has a serious disability, has done for me (and others) although he has far fewer resources than those sponsoring the conference.

Sincerely,

Anonymous

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Letter to the Editor

I have recently needed to purchase a used wheelchair accessible van with a lift due to my deteriorating health. In the last week I have encountered difficulty parking in three locations, including medical facilities, due to cars being parked in the van accessible spaces.

The other day, I had my signal on to turn into a van accessible parking space and a man pulled into the space in front of me. I politely asked him if I could have the parking space since I’m in a power wheelchair and have a lift on my van. I need the extra space for my van because of the lift. He swore at me and told me he could park anywhere he wanted with his handicap parking permit. Onlookers shook their heads in disgust but made no comments.

I am on a limited income and will have a very tight budget to make my van payments. I hoped when I got this van it would solve my problems getting out into the community. I get so frustrated and upset when I can’t park so I have to return home or have to try to arrange for someone to travel with me.

I see two approaches to addressing this issue. The first is to inform the public of the problem. If people are aware of how they impact other disabled people, they would change their behavior. The second approach is more complicated. Either make all handicap parking spaces van accessible or have them designated “Van ONLY.”

I’m open to any suggestions.

Sincerely,

Judith of Plymouth

 

Dear Judith of Plymouth:

The problem you are having with utilizing van accessible parking spaces with your lift-equipped van is very real and serious. The clear purpose of the van accessible parking space is to provide an eight-foot access aisle so that one can lower their lift or ramp and still have maneuvering space to get off of the lift or ramp.

Several states have implemented more restrictive disability parking laws allowing only vans to park in van accessible spaces, especially in larger parking lots where a number of spaces are generally available. Last session we were working on a similar provision in Minnesota, which would have restricted van accessible disability parking spaces to vehicles that obtained a special permit from the Minnesota Department of Public Safety. We will continue to work on language in the 2006 session to restrict parking in van accessible spaces in larger parking lots.

In the meantime, don’t give up hope. The new building code, which will hopefully go into effect during the summer of 2006, will require all new access aisles to be a minimum of eight feet wide. This means all the disability parking spaces in new and renovated parking lots must provide the space needed to get out of your van.

As we work to pass legislation dictating how one should behave in public, let me take this opportunity to say to all those who knowingly use van accessible parking spaces that don’t need the extra space and where other spaces are available – please don’t! Please be polite! Disability parking works well only when we are considerate and respectful of one another’s needs. If you don’t need the eight-feet, leave it for someone who does!

Margot Imdieke Cross,

Accessibility Specialist

Minnesota State Council on Disability

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Letter to the Editor

I don’t think that the discussion of the “tragedy” of Hurricane Katrina should be seen as a diversion from the issues surrounding race and disability In fact, I think this disaster provides a stark and telling illustration of how the intersections of the issues of race and disability play out in a concrete way in people’s lives.

Throughout this week, I’ve been struck by the presence of disability. In the New York Times, I read of a woman in the Superdome grabbing a reporter’s arm, pleading for water for her daughter, a wheelchair user. “I’m afraid she’s going to have a seizure,” the mother cried. On NPR, I heard the voice of a man calling out, “Dilantin! I need Dilantin!” The President of Jefferson Parrish broke down as he told of a man, who’d been reassuring his mother, institutionalized in a nursing home that help was on the way—only to learn that she drowned on Friday. Then there is the image of the woman in the wheelchair, dead outside the Convention Center.

I’ve been enraged on so many different levels this past week—at the way that people with disabilities seem to have been forgotten by those who ordered the evacuation of the city and by the rescuers, at the appalling conditions everyone—disabled and non-disabled— who sought shelter in the Superdome and the Convention Center endured. “I was heartened when I read of entertainer Kanye West, Jesse Jackson and other African American ministers stating the obvious racial dimension to this disaster. That this disaster had an especially horrific impact on disabled African Americans is clear.

We need to re-think our use of the word “tragedy” when applied to this. While these events were undeniably tragic, they were hardly inevitable. For a start, let’s think about why the levees broke in the first place. Our nation as a whole may have problems with its infrastructure, but these problems are particularly acute in poor communities. I am sure there are statistics about this, which I don’t have at the ready, but anyone who has ever wheeled or walked along the sidewalk in an upper middle class neighborhood and also wheeled or walked along one in a poor neighborhood knows this difference in their bones. Infrastructure—from sidewalks to curb cuts to levees—is under funded in poor communities. That a hurricane would hit New Orleans was inevitable. That the levees, which had been neglected during both Republic and Democratic administrations, were not being adequately maintained was also a known fact.

And while we may be assured that the increase in ferocity of hurricanes has nothing to do with global warming, I know I’m not the only one—Daniel Shorr was voicing the same question on NPR—who wonders if this spate of recent hurricanes is an opening salvo in the more extreme weather predicted as a result of global warming.

I’m also wary when the sole solution offered is to donate to the victims. The impulse to reach out and offer help to those in need is a generous and good one. As people with disabilities, many of us have experienced charity first-hand, and we understand that the charity model has many drawbacks. There are the worthy recipients of charity—the smiling, grateful cripples—and the unworthy—the angry, bitter cripples; the “looters,” those who, as Barbara Bush put it, “were underprivileged anyway, so this is working very well for them.”

Above all, charity keeps in place the notion that the “problem” is located in the bodies of people with disabilities, in the individuals who have been displaced, rather than in social structures and economic policies. I would like to see us putting our energies, our time, and our money into demanding structural change.

I think we, as disability activists and scholars, need to enter into the national dialogue, loudly and clearly, stating that these deaths of PWDs were not inevitable tragedies, but were the result of government policies that ignore our needs. We need to say that this neglect does not hit all disabled people equally, but was especially lethal for the poor, predominantly African-American, residents of New Orleans and surrounding communities.

I think we should also demand that, as the dead are counted, the powers that be also collect statistics on how many disabled people are among the dead. How many were found in nursing homes? How many were found in community care facilities? I think the answers to those questions will shock the conscience of our nation.

We need to reach out to those people with disabilities who survived, and do all we can to enable their voices to be heard. In general, I’m not a big fan of working within the legislative process, but I think this is a time when it makes sense to contact your senators and representatives and get them to ask some hard questions in the hearings that will be happening in the upcoming weeks. What were the plans for evacuating institutions—nursing homes, community care facilities? What were the plans for communicating with people who were deaf and hearing impaired? How was lifesaving medication going to be delivered to people who had been forced to flee? In short, what thought was given to the lives and needs of people with disabilities?

We should be writing letters to editors, calling reporters; talking in our classes and to everyone we can about the impact of Katrina on people with disabilities, and especially on those in our community who have the fewest resources.

Anne Finger

anniedigit@mindspring.com

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Letter to the Editor:

This letter is intended to clarify a quote which was printed in the September 10th edition in the article entitled PCA Program Changes stating “Every organization a PCA is employed with must get a background study clearance for that individual PCA. The DHS background study costs each organization $25. This process is costly and time consuming for the DHS Licensing Division and provider organizations. It also produces increased workloads and backlogs in the processing of the background studies.” I would like to take this opportunity to expand and explain this quote by pulling from the article I wrote, which was published in our organ-ization’s newsletter:

I attended the Department of Human Services’ PCA Provider Focus Group on August 12, 2005 to listen, learn, and discuss the law and policy changes to the PCA Services in the State of Minnesota. A representative from DHS Licensing Division informed everyone attending this meeting that the new law provides the DHS Licensing Division access to all Minnesota county court databases and the DHS Licensing Division will be conducting daily searches of county databases against all pending and cleared background study participants. This will allow DHS to identify when an individual in their background study database commits an offense considered a violation of the background clearance. If this happens, the DHS Licensing Division will notify the PCA organization immediately to have that person removed from providing direct care.

I would like to see the DHS Licensing Division look at streamlining the Background Study process. Every organization a PCA is employed with must get a background study clearance for that individual PCA. The DHS background study costs each organization $25. This process is costly and time consuming for the DHS Licensing Division and provider organizations. It also produces increased workloads and backlogs in the processing of the background studies.

At a recent DHS NetStudy Training Course the trainer handed out slides with the following current status information: 1,500+ have been trained or are scheduled for NetStudy training; 1,783 NetStudy Accounts activated; 4,450 NetStudy users. It also stated that NetStudy processes over 100,000 studies which is 70% of the background studies processed by DHS. The Background Studies are generating over $3.5 million for DHS a year. While this sounds great to DHS, the $25 each organization is paying for each background study is money which could go to increase the pay for the Personal Care Attendants.

In light of the DHS checking daily with the county databases, I would like to propose that the DHS Licensing Division and the Legislature examine the idea of allowing the background study to travel with the PCA Provider Number for 12 to 18 months from organization to organization. As long as there is not a match from the county databases, every 12 to 18 months a new background study is completed to update the system. This would allow streamlining the process, employee cost savings to both the DHS and Direct Care organizations, lessen the workload and backlog for the DHS, and lessen the concerns of consumers regarding time gaps in PCA services due to the background studies.

Judy Elling, MSW

Program Administrator, People Enhancing People