New Jersey Proposal to Close Five of Seven Institutions

A New Jersey Assemblyman and Budget Chairman, Louis Greenwald, a democrat from Camden (pictured on right), is proposing to close FIVE of the seven state institutions for people with developmental disabilities. Can the other two be far behind? I hope not. His proposal calls for them to be closed within five years, which seems longer than it should take, but at least it's a plan. The money now spent on them would be used for community housing. Hallelujah!


According to a posting by the New Jersey Star-Ledger's reporter, Susan K. Livio, Greenwald says there are compelling moral and economic reasons to "radically restructure" the way the state spends money on people with developmental disabilities. This is one of those cases when throwing money at the problem makes it worse. Big bucks mean maintaining prisons for people with disabilities.

It's becoming clearer around the country that incarceration is not cost effective. Even the prison system is moving to house prisoners in their own homes. The Natchez Democrat newspaper did a cost comparison between incarceration and in-home house arrest. Originally designed to reduce prison overcrowding, officers say the program has another important benefit: It is cheaper than other forms of incarceration. They found that the cost to house a prisoner in a county jail is approximately $22.21 per day; in a work center, $33.69; in a restitution center, $23.53; and in the Home Supervision Program, $6.46 per day.

Greenwald said the state can no longer afford to support seven institutions, where it costs about $227,000 to house EACH of their 2,900 residents. He estimated community care would cost less than half of that amount. That is $658,300,300 annually.

"We are warehousing human life," Greenwald said January 27, 2008. "We pride ourselves on being a progressive state in health care and science." Other states have closed a total of 140 institutions, and New Jersey has not closed one in 10 years.

According to the article he is sure that the state's labor leaders, numbering about 8,000 at these institutions will oppose the measure. Don Klein, executive vice president for Local 1040 Communications Workers of America, said the bill appears to be a stunt to save money. Klein's position is a short-sited and regressive. Each individual will leaving an institution will still need in-home services. There's no reason those workers laid-off at the institutions could not transfer to being in-home workers and should not have union representation.

He also anticipates that some parents and family members how have relatives in these institutions will who prefer the around-the clock care provided by the developmental centers. Being a parent, I understand the concerns they face; however, the concerns of the parents should not interfere with the independence of their adult children.

New Jersey's State Human Services officials say there are roughly 2,400 people living at institutions who are willing and able to move to community housing. Under the bill, two centers -- one in north Jersey, the other in south Jersey -- would remain open to accommodate the people who want to stay. If it were you... which would you prefer? If available community options were available, those two remaining facilities will also be empty.

Joseph Young is the executive director for Disability Rights New Jersey. The agency sued the state on behalf of people who want to leave institutions and 8,000 others living with families who are on a waiting list for state-funded housing, called the bill "an incredibly ambitious program. Whether they can logistically do it I have no idea, but clearly they are headed in the right direction," Young said.

C'mon Mr. Young! way to stick your neck out. People are languishing in hell holes. Let's be "incredibly ambitious."

One can only hope the forces for disability advocates will succeed in their efforts; also that other states (are you listening Illinois?) will follow their lead quickly.

If you want to become involved in creating more community choice options for people with disabilities in Illinois, contact the Campaign for Real Choice, Chicago ADAPT, or your local center for independent living's Community Reintegration Program. Other states have similar programs, but I am not familiar with them... do a little Google research to find them.

How Proud do You Feel?

Pride is a feeling we all tend to wear like an ill-fitting suit. We can put it on, but it never quite feels comfortable.

Pride is after all, one of the Seven Deadly Sins. All our young lives we've been trained in our Judea/Christian up bringing, that pride comes before the fall; pride is at the bottom of all big mistakes; and, that pride makes us artificial. Is it any wonder we have difficulty wearing pride?

This morning for example, a co-worker said I looked, "pretty". I am just a few months short of my 60th birthday. My youthful attractiveness has faded; replaced by the strange unfamiliar face of an old lady. However, I had paid particular attention to dressing today. I have a presentation later and I want to look nice. So I fluffed my hair a bit, put on a new shirt and jacket, and slipped on my wine colored winged-tip orthopedic shoes instead of tennis shoes, my most used footwear.

My first reaction was to throw her "pretty" comment aside. (I'm not pretty!) As soon as I heard it, I wanted to squash it. But then, the other side of my brain spoke to her instead. I chirped, "Thank you! It was just the look I was going for." And immediately, I felt prettier. It was a prideful thought, but certainly not a bad thing to have happen to me.

I've been thinking about and working on this pride thing for a while; especially Disability Pride.

Laura Hershey's poem has been probably one of the most helpful guides to building my own disability pride. It is titled, Get Proud by Practicing and it hits the nail on the head.

In part of her poem, she writes...

You can add your voice
All night to the voices
Of a hundred and fifty others
In a circle
Around a jailhouse
Where your brothers and sisters are being held
For blocking buses with no lifts,
Or you can be one of the ones
Inside the jailhouse,
Knowing of the circle outside.
You can speak your love
To a friend
Without fear.
You can find someone who will listen to you
Without judging you or doubting you or being
Afraid of you
And let you hear yourself perhaps
For the very first time.
These are all ways
Of getting proud.
None of them
Are easy, but all of them
Are possible. You can do all of these things,
Or just one of them again and again.
You get proud
By practicing.

She is saying by just doing something you have never done before builds pride. Laura tells us to do it with others; togetherness eases the doing and makes you proud. She is also political in her focus of disability pride. We need to think of ourselves a worthy of pride, that we are pretty, and funny, and smart, and valued. And we must see that in others too. Doing that means you will never be alone...

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.

You get proud

By practicing.

Those seven deadly sins; for sure, some are evil. But pride, I believe got a really bad rap. Pride in religious traditions means: excessive belief in one's own abilities, that interferes with the individual's recognition of the grace of God. The early church used the sins to teach subservience to their church and their God. Pride is an intellectual tool. If you used your intelligence to challenge the church, you were harder to control.

However, Disability Pride honors all of God's creation, does it not. As oppressed people we must develop a sense of pride to succeed, to have any a quality of life equal to the non disabled, to be able to love ourselves, others, and their accomplishments. If we do not feel pride in ourselves, our value, our people, our movement, there is no grace; and there is no movement.

You can read Laura's entire poem here.

You can buy a copy of Pride against Prejudice at Amazon.com here

Accessibility via Gadgetry

I love gadgets, do-dads and things that go blinky-blinky. From Rube Goldberg machines that don’t accomplish a thing, to thing-a-ma-bobs that have an actual purpose; I love finding new devices and fiddle with ‘em.

I guess that is why I was so fascinated when I learned that the University of South Florida researchers developed a technology that uses cell phones to help people with brain injuries and other cognitive disabilities to use public transportation.

It’s called a Travel Assistive Device. It uses a Global Positioning Satellite (GPS) technology inside cell phones to keep track of where riders with disabilities are along their bus route. Then the bus approaches the rider’s stop, the cell phone will vibrate and a voice message reminds the rider to pull the cord to tell the bus driver to pull over at the next stop. Cool, ey? With one caveat.

GPS system make me a little squeamish, from a Big Brother point of view. However, if you use the device it to get off on a specific corner and then turned it off; no one would be the wiser if you slipped into a kink shop or bought a dozen donuts all for your lonesome, would they?

I used to know a man who provided bus training for people with cognitive disabilities. He used to teach them to look for landmarks to determine when to pull the cord. However, if the rider were looking at a pretty girl, or sneezing, or day dreaming, it would easy enough to miss the turquoise house, and the rider would be lost, usually riding to the end of the line before the driver would notice him/her. It was that timing that was the hardest for him to teach.

Researchers are testing it in Tampa now. Users are allowed to download the software directly from the web site to their cell phones. The technology works with Google Transit (Don’t ya just love google?) That part is free.

However, to roll out the program nationally, will take some bucks. They are looking for a foundation, business or government agency that will build a computer network to support the program and to hire technical experts to answer users' questions.

Forgetful older adults, kids riding home from school, all kinds of people will find this technology very useful. It’s another example of how a small investment in technology has a big payoff for all. I’m off now to re-check the numbers on that lottery ticket I bought last week.

For the technically minded among you, you can read the entire 81 page research project at: http://www.nctr.usf.edu/pdf/77711.pdf

Memories of JoAnn

On December 30, 2009 JoAnn Bayer died in a nursing home in Belleville, Illinois. She was a life-long activist and resident of Springfield. When I heard she died I asked a few of her friends to write down a few of their memories. There they are.

Dr. Robert Kilbury, Director, Division of Rehabilitation Services, Illinois Department of Human Services

• Need some folks from the community to show up at a DORS Appropriation Hearing?
• Need someone to write a letter to the editor about personal assistance wages?
• Planning a disability rights rally that requires a number of pwd's to attend?

For many years in Springfield, these questions were often answered by a call woman called JoAnn Bayer. As of 2009, we will have to find another answer, another leader. JoAnn, that little powerhouse, is gone from us at the age of 60. No doubt, she outlived all the estimates of her longevity when she was born. She always managed to live life to the fullest; I understand she was happy in spite of spending the last few of her days in a Belleville nursing home.

I will always have a living memory of JoAnn with her Bella Abzug hat on, with her long-time personal assistant, Bessie, standing next to her. I will miss JoAnn Bayer very much; "What's up, Doc?"

Ann Ford, Executive Director Illinois Network of Centers for Independent Living

How do we begin to remember JoAnn? As far back as I have memories of coming to Springfield; JoAnn is part of those memories. If there were trips to the Capitol, she was always there – front and center – daring those ‘in power’ to try to ignore her. I learned once I moved here that if we needed folks to turn out to rally, protest, or testify, the first call was to JoAnn. She would show up, she would bring people, and she would show newcomers how to do what we do and not be afraid. Maybe she never took advocacy 101, but she instinctively knew how to grab attention and what to do with it. Many times, she would come to me at an event, dragging a reporter and telling the reporter “this is someone you need to talk to”.

I have one memory of a bonding experience with her. Many years ago before I lived here and had any idea where anything was, I was in town for a weekend event. JoAnn and I were talking, and discovered that we were both Catholic. She asked me if I would like to go to church with her, and I did. I followed her down streets until I had no idea where I was. She knew where curb cuts were and was not, when we had to roll in the street, and when we had to ask for help. She took me to a beautiful old church, which has subsequently been torn down. As I basked in the solemnity of the ceremonies, I knew so well, I watched her share that experience. After mass was over, it was clear that everyone at that church knew her, and she was determined that they would know me as well. I cannot imagine royalty being treated any better. Then we left that beautiful setting and worked our way back to the hotel, two girls intent on having fun for the evening.

JoAnn, like all of us, was a human being. She had good qualities that made us love her, and some traits that we wished she did not have. Until the end, her heart was with us, and any energy she had was given to our cause. When she could not show up any more, she could read and watch the news and call with info we might have missed. One businessperson who knew her said, “She kept me on my toes.” I responded that she kept us all on our toes. I will miss being on my toes, and I will miss JoAnn.

Mike Meiselman, Board Member – Coalition of Citizens with Disabilities in Illinois

I never noticed JoAnn Bayer was a little person. If England’s Queen Victoria stood over six feet tall, JoAnn was still a more formidable figure. There was no refusing JoAnn. There is no one who encountered her who was not subject to her personal advocacy.

JoAnn was a fighter. Not just for her needs; but to meet the needs of all.

At the State Fair a couple of years ago, the Campaign for Real Choice called for demonstrations when both political parties were having their fair days. Several hundred of us gathered in front of the stage on Democrat day. When the television cameras were going to report on the politicians’ speeches the crowd would be carrying signs saying “Shut Down Lincoln Developmental Center” and “Choice for All.”

It was not at all the message that the politicians wanted to project. The Democratic leaders urged their followers to get in front of us so their signs would be on television instead of ours.

It was scary; some of those union guys were pretty big. Nonetheless, we began to resist; JoAnn, rocked her power chair back and forth; two inches forward one inch back; others who used power chairs followed JoAnn’s lead and slowly advanced toward the front of the stage. Others linked arms and pressed forward. The Democrats gave up and ceded the land in front of the stage to us. West Point is still studying our tactics today.

JoAnn made me feel very special. She brought me candy. She held my hand. She would call me every time I had something published in the newspaper. She wished me health and peace on every Jewish Holiday. Shalom JoAnn.

Cilla Sluga, Blogger

The doctors who examined JoAnn will undoubtedly say she died of heart failure. Her health had been failing for years. But, I don’t think that is why she died now. I believed she died from a lack of community living options and was forced into a nursing home. A strong spirit like JoAnn cannot survive in a prison. So, why did she agree to go?

She got tired; really really tired. Since Bessie retired, she struggled to get quality personal assistants with enough coverage (hours) to maintain her quality of life. As you have read by the testimonials above, JoAnn was a pit-bull of a fighter. If JoAnn could not make the system work, it is beyond broken.

It tells us that not even a fighter like JoAnn cannot win alone. We need to make our movement even stronger. We need our movement to fight to pass the Community Care Act NOW; and then fight to enforce it.

Photo of JoAnn Bayer with one thumb up in the air. Next to her is a certificate for lunch with the Mayor of Springfield. She had a choice of door prizes at a conference; some were expensive, personal, or shiny. But JoAnn, ever the advocate, wanted that lunch. She had already started writing her list of things to talk about with him before the photo was taken. We know she had fun at the lunch... no word on how the Mayor fared.

If you have any memories of JoAnn you would like to share, please feel free to use the comment section below, or send them to me bignoiseblog@gmail.com and I will include them.

History on a Two-Lane Highway

We love small town museums. They come are as close to being the keepers of the peoples’ history as we have in this country. Countless hours of volunteer work goes into cataloging and maintaining their priceless local collections.

Most of them are open very limited hours. We have made dozens of trips between our home in Springfield, Illinois, to my parents home in Stroud, Oklahoma. We know every little museum along the way. However, no matter what time or day we stopped, many are locked tight. It took a while, but we finally figured out that if you call ahead, someone will open it up for you.

Here are a few of our favorites:

John Brown Museum/Park, Osawatomie Kansas
It took us three days to get home from Oklahoma when we found John Brown’s cabin in “bloody” Kansas. What happened in Osawatomie and Lawrence were the events that forced the beginning of the Civil War. When people think of John Brown, they usually think of the events at Harper’s Ferry. However, Brown, his sons, and other abolitionists moved to Kansas to ensure it would be a free state (You will now know just how nerdy we really are. Visiting there made the Kansas-Nebraska Act come alive for us.)

Free-State Hotel, Lawrence Kansas
Missouri Ruffians (lead by the evil Quantrill and his raiders) burned this hotel to the ground twice. Lawrence was the bloody center of “bloody” Kansas activities before the civil war. The “free state” hotel owners vowed to rebuild it one story higher each time the pro-slavery ruffians was burned down; this would allow more free-state sympathizers to have a place to stay. It now stands at five stories.

We wanted to stay there, but the rooms were too expensive for our travel budget. However, we hung around the lobby/museum for so long and asked so many questions the desk clerk gave us the two-room Langston Hughes suite (he lived in Lawrence for a time), for $65.00; maybe to just get rid of us!

Mining Museum, Mowequa Illinois
Many of the mining museums we visit are dedicated to the miners who died in that town’s mining disaster. There is no mine without a disaster in its history, no matter how short. Such is the case with the Moweaqua Coal Mine Museum; a memorial to the 54 coal miners killed in 1932.

One of the reasons I love this museum so much is because it has a rare picture of the members of the founding convention of the Progressive Miner’s of America, of which my grandfather was a proud member. We have an even rarer picture of the founding members of the Progressive Miner’s of America Women’s Auxiliary. I gotta get me a copy of the men’s picture to have the set!

Pitcher/Baxter Springs Lead/Zinc Mining Museum
We enjoy driving on what remains of U.S. Rte 66. The old route takes you through Pitcher, Oklahoma and two miles to the North, Baxter Springs, Kansas.

It feels weird driving through a Superfund Site; a place considered one of the most toxic places in the country, but that is what Pitcher OK is. It had a Lead/Zinc mining museum that we tried getting into several times, always finding it closed… and finally empty. Pitcher is a virtual ghost town now, with only a few people who refuse to relocate.

With a little research, we found the officials moved the collection upstream to Baxter Springs, Kansas. Recently, we called ahead to get into the museum, only to learn that all the artifacts and papers were at the University of Pittsburg in Kansas being archived and catalogued. That part of the museum will not open for four more years. Nonetheless, they still coal mining artifacts, family histories, and newspapers that documented that they had more bordellos than churches.

A couple of other museums outside our Springfield/Stroud route that we enjoyed include:

Cedarville, Illinois Jane Addams Museum Birthplace and Cemetery
Driving the two-lane from Madison, Wisconsin to Springfield provided us with another unique experience. Just across the Illinois border, we saw a sign alerting us that there was another roadside attraction; “Turn Right” for the Jane Addams museum and cemetery. Jane Addams, we knew was one of the founders of an early center of Social Work, Chicago’s Hull House. She was also one of the founders of the Women’s International League for Peace and Freedom and Nobel Prize winner. She was, and remains a very controversial figure. What justice would this tiny town in rural Illinois give to this radical, peace activist? There were displays about her early life in Cedarville and what her parents did. There was information about the one room schoolhouse that now housed the museum. But, the majority of the exhibits displayed Jane Addams radicalism.

Voting Rights Museum, Selma Alabama
It sits at the foot of the Edmund Pettus Bridge; the people who made the march for voting rights run this little storefront museum. It has pictures of the marches; a big pile of shoes worn during the march; plaster casts of marchers feet and more. A moving part of the museum is the wall of remembrance. It consists of little post-it notes written by marchers, in their own hand, of things they remember about the march. The most moving part of the museum was meeting local people who participated in the march.

Orient #2 Mine Museum West Frankfort IL
Southern Illinois has a glorious history of resistance to oppression. When the numerous coal miners in the area felt they were being sold out by the United Mine Workers of America, they formed the own union, the Progressive Miners. West Frankfort was home to the largest coalmines in Illinois and provided the base for the Progressive Miners.

We were meandering along two lane highways in the area and came across a shut down mine. All its buildings were intact. One building held mining artifacts. The miners’ bathhouse still stood. It was in places like that where the miners’ would ask their comrades, “If you wash my back; I’ll wash yourn.” The miners’ elevator still worked; they usually offered a trip to the mine’s face. However, on the day we visited, we could not go down; a number of retired miners were conducting a mine sit-in to get much needed state funding for the miners’ museum.

There are many more museums we visited; many more we could not get into and had to be satisfied with peeking though the windows; and many more yet to find. We love them and they all gave us some knowledge our history.

“If you don't know history, then you don't know anything. You are a leaf that doesn't know it is part of a tree” ~Michael Crichton

Not in My High Rise

On about December 12, 2008, we found out that our local housing authority was about to redesignate some of their local high rises to senior only, essentially lodcking out people with disabilities from accessible subsidised housing. Their rationale ranged from young and old should not mix, to prostitutes are entering the highrise.

When our action team heard about the meeting from the director of our local CIL; we sent out an action notice encouraging everyone we could to attend the meeting to stop the proposal. We also sent the action notice to the local media. This article appeared in the paper the morning of the meeting.

Our combined work paid off. Despite the short notice about 30 mental health and disability rights activists turned out to challenge the proposal. I wrote the following buest editorial for the local paper, but they chose not to print it. So, i’m publishing it here.

You would think that public policy decisions would be based in fact. You'd be wrong.

The Springfield Housing Authority held a meeting on December 15, 2008 to discuss designating "senior only housing" at the Bonansinga, Hildebrandt, and Sankey high-rises. The move would essentially lock out people with disabilities, age of 62 or younger, from affordable accessible housing. Hildebrandt is the only one of the three high-rises that currently accepts people with disabilities under the age of 62. The board members' arguments to measure the worthiness of this decision is fundamentally based on innuendo and stereotyping.

In the July 2007 minutes, a SHA board member said prostitutes had been frequenting the Hildebrandt; and that teenagers are going in and out of the building at night. This same board member brought up redesignating Hildebrandt again, during the November 2008 meeting.

A second SHA board member said seniors did not feel safe; and that the perception "of not feeling safe" was the same as "not being safe." Not accepting people with disabilities under the age of 62, the SHA board member implies, would make seniors feel safer.

Yup, that's the rationale for making this drastic change and limiting independent living options for people with disabilities.

Luckily, the SHA still has time to consider its decision--based on facts. Here are a few to consider.

• According to Springfield Police Department's Public Information Officer, they have received no calls from SHA staff or residents at the Hildebrandt about prostitutes: none, zero, nada. If this illegal activity is actually happening, why doesn't security at the building call the police to stop the debauchery? Secondly, if it is happening, who is to say a young person is calling prostitutes. Old men also are known to also avail themselves of such services.
• A teenager going in and out of the building is no crime. However, the implication is that they are up to no good. If they assemble unlawfully, harass residents, or are somehow making themselves a nuisance, why isn't security calling the police to remedy the situation? No illegal activity should be tolerated; however, if they are there lawfully, why bring it up? Besides, who says these teenagers are there because of younger people with disabilities. Older people have grandchildren that visit, don't they?
  

The SHA board members' remarks smack of bigotry. If they said that residents of the high-rises felt unsafe because black people lived in the building, the bigotry would be evident. Saying it is people with disabilities cloaks the remarks, because society is not used to seeing people with disabilities as worthy of consideration, let alone as people with equal rights. We, in the disability rights movement, call it ableism.

Consider these facts too:

• People with developmental disabilities have a 4 to 10 times higher risk of becoming crime victims than people without a disability.
• Sixty-eight percent to 83 percent of women with developmental disabilities are sexually assaulted in their lifetime; that is 50 percent higher than the rest of the population. More than half never seek legal or treatment.
• Eighty-one percent of people with mental illness are physically or sexually assaulted; and,
• More than 85 percent of women with disabilities are victims of domestic abuse, in comparison with, on average, 25 to 50 percent of the general population.
  

People with disabilities are not criminals or deviants. Their presence alone does not jeopardize anyone's security.

According to the Illinois Assisted Housing Action Research Project, SHA needs to reflect on these facts too:

• As of March 2006, IHDA had 4,889 accessible units and 19,631 adaptable uni in its inventory. Combined, this is approximately 1⁄3 of its current income-restricted units for the entire state.
• Proportionally more persons with disabilities rent (32%) and are rent-burdened (60%) when compared to non-disabled (25% and 46% respectively).
• More than half (52.7%) are for seniors or elderly only. When the state average of accessible and adaptable units based on Illinois Housing Development Authority's affordable housing inventory is applied to the entire affordable (subsidized) housing stock, they estimate at the high end that 7.5% or 8,466 units could be accessible and 30.1% or 33,977 units could be adaptable statewide.
• While there are many older adults with disabilities (38%), the majority of persons with disabilities are between 20 and 64 years of age (52%).
• About 15% of persons with disabilities in Illinois are veterans, which represents 24 percent (200,562) of all of Illinois' veterans that had been in active duty before 2005.
• Nearly 30% of persons with disabilities had income levels below poverty in 2005 (<$19,999), which is considerably higher than non-disabled individuals (11%)
• African Americans have higher percentages of persons with disabilities while Whites and Latinos have a lower percentage.
• Based on emergency shelter data for Illinois, more than half of the individuals using shelters are identified as having a physical or psychiatric disability (about 24,000 people in 2003).
  

The agenda distributed by SHA for their informational meeting gives the impression that the board thought it would be easy to change the high-rises designation. They didn't count on 30 or so disability/human rights advocates showing up.Thank goodness they did.

It is difficult to imagine that in this housing climate the Board of the Springfield Housing Authority could even consider removing another building from its inventory of housing options for younger people with disabilities. In fact, the data shows that SHA needs to designate more accessible-affordable housing for people with disabilities. The strong turnout of advocates guaranteed that the needs of the disability community will not be forfeited without a struggle.

One disability rights advocate at the meeting defined what SHA was proposing as an "unconscionable" act. I agree.

Don't Go Up In Smoke

What if you lived in a nine floor high-rise building and used a wheelchair for mobility. Your own personal safety during a fire or other emergency would be a concern. But then, you would think that you weren’t the first to think of it, and of course the fire department would know how to get you out; they would have a plan.

Someone raised that issue to our local action team. Other people who lived in the same building were also at the meeting. As they talked, it became evident that each person had a different idea of what they were supposed to do; some didn’t have a clue about what to do.

They also said that the fire alarm goes off sometimes several times a day. Sometimes the alarm would sound on one floor, but not another.

Our action team took on the issue; determine the fire/emergency procedures and make sure everyone in the building knew what they were.

The Plan

We developed objectives. They were:

1. Get a copy of the fire/emergency plan from the landlord.
2. Share the copy of the plan with the residents of the building.

We determined that if we needed friends or allies in to reach our goal we would use the Fire Department, State Fire Marshall and the Media.

One of the residents volunteered to get us a copy of the plan. Another member of the action team said she would call the fire department and get their plan. We did not think it would be a big deal to accomplish this goal; we just needed clarification and spreading of the information.

The Barriers

A few days later, the volunteer went to the office and requested a copy of the fire/emergency plan. I kid you not, she said, “You cannot see the plan unless you get permission from the owner.” What the %)#&!?

The action team member asked the next most obvious question, “How do I get permission from the owner to see the fire/emergency plan that affects my life?” The office manager replied that there was really no way to reach him since he was in Dubai. Dubai? Double what the %)#&!?

The building owner, William Cellini, was on an extended offshore hiatus to avoid answering embarrassing questions about his relationship with Tony Rezko and other infamous politicians in Illinois (including Blago).

The team member who called the fire department did not fare much better. The public safety officer told her that if there was a fire, each resident should stay in their unit; the fire department would come and get them if necessary. Can I say triple what the %)#&!?

All of a sudden, the team felt like Yossarian in Catch-22. We had to re-group.

The Plan, Revisited

Confronted with the reality that no one had a plan to keep us from becoming toast, we knew it was up to us to save our own lives. We needed to implement Plan B, media and public exposure.

The fact that Cellini was a controversial potential felon, helped us get the local media interested. Our members were eager to share their stories with the press. It turned into a Sunday morning, front-page, above the fold expose’. The fire chief recognized that the stay-put plan was unpopular with people with disabilities. The building management said they were working on an emergency plan.

We had public opinion on our side. There were letters to the editor and we wrote a guest editorial for the paper. I had a few people stop me on the street and say, they had never thought about the issue before. We had raised public awareness.

The Victory

The fire chief invited the action team to a meeting to see if we could find a solution. First, he apologized and admitted that they failed to live up to their responsibilities and thanked us for pushing them. We were a little skeptical; not sure if they were really our allies at that point. But, they had done their homework and wanted to right the wrong.

We worked with them, and they worked with the building owner to develop real plans. They developed a presentation for all the residents of the building. They helped the building management to write and implement an fire/emergency booklet that each resident received.

A few of our members remain skeptical of the plan; but that is a good thing. It will keep us all pushing for even greater security for us in our homes.

Not only that, but the fire department decided to implement the same strategies in every high-rise in the city. It was not just a victory for people with disabilities, but for the entire community…

That is often the case. Right a wrong for people with disabilities and you improve the quality of life for all.