The Roving Activist’s Blog

For the past few days, the Obama Transition Team has asked for community discussions on health care reform. There have been several in Upstate New York, including two here in Rochester. I attended one of these meetings yesterday, and I am still fuming! Let me tell you what happened, and please note that part of the story is taken from an email that I sent to Chris and Diane.

Yesterday evening, I attended the Health care reform community discussion meeting–or shall I say, I tried to. The site, Boulder Coffee, located at Genesee and Brooks, is inaccessible to people who use wheelchairs! There is one large step at each entrance to the shop. I asked for the manager, who was very apologetic, and looked around, and found a plywood slab, and I was able to gain access. Unfortunately, that solution would not have worked for someone using a power chair; the slab was too flimsy and lightweight. Further, the meeting was set to be held upstairs, and the building has no elevator. I told Emily Queenan,  the organizer of the meeting, that I wanted to attend, so they held it downstairs.

To say that I am livid would be a vast understatement! This site was part of the original Brooks Landing project, and since the building was renovated, should not have opened without being accessible. They seemed to believe that the ADA says that they don’t have to be accessible because they did not receive federal funds, but I told them that they are wrong. The building is a public place that can be made accessible, and by federal law, it must be. I left my card with the manager to give to the owner, but this is not the last that they will hear from me!

I would like to write two letters-one to the Obama Transition Team because if this was done under their auspices, they must know that these meetings are being held in inaccessible venues. After all, if yesterday’s site was inaccessible, there is a fair possibility that other sites used for these meetings were inaccessible, as well. I’d also like to include the state Democratic Party representative as a recipient of this letter.

The other letter would go to the Mayor, Molly Clifford, John Borek, who is the Sector 4 President, and of course, the owner of the business (perhaps, that should be a third letter). These folks have to understand that the ball was dropped regarding accessibility, and that is unacceptable!

RA’s note: Some of you, Gentle Readers, might be familiar with Brooks Landing and Sector 4. I wrote fairly extensively about it last year, when Sector 4 held its Brook’s Landing project unveiling at an inaccessible location. You’ll remember the letters that I wrote to the Mayor, the aforementioned John Borek, and others, and how that led to Sector 4 holding a another unveiling at CDR. There was follow-up between CDR and the architects, as well as the city on the Brooks Landing project, with input from us on how to make certain venues within the Project fully accessible. Honestly, I though that we had made some inpact. WRONG!!

Let me say it again. I am livid. Fuming. Furious. Outraged! Furthermore, I am tired, okay? I am simply tired of the same apologies, tired of the stupid excuses, tired of being made to feel that I am being unreasonable, tired of my community being rendered invisible, and tired of having to put up with discrimination when there are laws in place that are supposed to protect us. I am tired of the fact that my people are an afterthought, at best, unless we are present, and even then, sometimes are still unconsidered unless we speak up. I’m tired of the verbal (and sometimes literal) pats on the head that I get when I introduce myself, or speak of my accomplishments in nondisabled settings. Frankly, I am tired of having to bite my tongue, and be professional when I am raging inside, but I know that if I say what is truly on my mind, people won’t see me as Anita Cameron, Systems Advocate with the Center for Disability Rights. They’ll see me as an Angry Black Disabled Woman, and treat me as such. What is especially tiring for me is the constant fight that I and other disability rights activists must engage in every day without fail, and without end. I can’t give up, though, because I am not fighting for me alone, but for every person with a disability who cannot fight for themselves, who dreams of a better world, who, themselves, has given up. It’s not about me, so, in the words of the Mozambique and Angola Freedom Fighters, “A luta continua” (the fight continues) because, in the words of Nelson Mandela, “The struggle is my life”, so I will, in the words of Justin Dart, “Lead On”!

Today, Terrie, Lisa, and I went to check out the structure at Price Rite, and took pictures and video, and measured the posts, and its barriers, as well as the carts. We then reported to Rocco Marcellino about the access, and how a mere two inches in the structure would allow unfettered access for people who use wheelchairs. He studied the video and pictures, and gave his own input, describing the plan for access. He was very excited, and hopes to have his project done by the end of next week.

Incidentally, the gate at Tops was locked, and there was no one there. However, by the time I got out of the van, the guy was there. I did take pictures to show Rocco when he asked, and of course, he did. I told Rocco that the poor guy was out in the cold, and probably wanted to warm up, which was even more reason to put the accessible structure in. He agreed.

After this, we’ll be making a call to Price Rite, since their access changes will be miniscule compared to Tops.

We had our meeting today with representatives from Tops stores. It actually turned out well. Diane was there, and so was Lisa. Rocco Marcellino, the manager of the Upper Falls Tops, and Robin Perrone, a Service Specialist, came to meet with us. During the meeting, ideas were presented regarding access. It was agreed that a structural change would be made to to the gate area that would eliminate the gate, but provide cart security and access for people who use wheelchairs. In the interim, if staff are not available to be at the gate, it will remain open. We all agreed that this change is satisfactory, and will work to see that it is done in a timely manner. Folks from CDR will periodically check to make certain that the interim solution is working, and inform Tops officials if it is not. I have been asked to be a contact person for Tops if there are questions, or if other problems or issues should occur.

Here is the letter that I received from Tops after our meeting:

Ms. Anita Cameron,

I have met with Paul Hetzel, the District Manager, who agrees that  to implement the barrier poles as at the Price Rite store, is a good solution.

Rocco and Paul will be speaking with the necessary corporate associates, this afternoon. We are all also in agreement that in the interim, if an associate is not available at the gate, at the Upper Falls Tops, the gate will be unlocked.

I would like to thank you for your time today and for bringing this important issue to our attention as well as helping us to understand how to look at this from the view point of our customers with disabilities. All of our customers are very important to us and to the success of our business.

I would appreciate very much if you would allow me to utilize you as a contact in the future if I should have any questions and would very much appreciate if you would contact me if you should notice any other opportunities in our stores that may hinder those will disabilities from having an enjoyable shopping experience.

Sincerely,

Robin Perrone
Service Specialist
Tops Friendly Markets

Here is the letter that I wrote to Tops in response:

Ms. Robin Perrone,

I would like to thank you and Rocco Marcellino for coming to meet with me and my colleagues regarding the access issue at the Upper Falls Tops Store. We are happy to know of the plan to implement the barrier structure at the Price Rite store as a solution that encompasses cart security and access for people who use wheelchairs.

We also agree that in the interim, if an associate is not available at the gate at the Upper Falls Tops, the gate will be unlocked.

I am unsure what the procedure is for implementation of the new structure, for example, if you first build a model of sorts, test it, then build the actual structure, but my colleagues and I would like to test the new barrier as you are installing it. The main reason for this is due to the difference in the area and floor plan, if you will, of the Tops and Price Rite stores. Also, it is good to test this out with people who use different types and models of wheelchairs. Since I have never been to the Price Rite, I plan to go there with a colleague tomorrow to test it out. I will immediately report my findings to Rocco Marcellino so that he and Corporate will have direct input.

I will be happy to be the contact person if you should have questions, etc, in the future, and I will be more than happy to let you know of any ways that Tops Friendly Markets can help people with disabilities to have a more pleasant shopping experience at Tops!

On a final note, I was wondering if, when the new accessible barrier is installed at the Upper Falls Tops, my team and I can join with you, Rocco Marcellino, and Paul Hetzel in a joint press conference? It would be great to put the news out there that Tops cares about all of it’s customers!

I look forward to working with you!

Anita Cameron

I am awaiting a response from Robin, and wiil keep you abreast of things. There seems to be a genuine desire on the part of the folks at Tops to work with us to resolve this to everyone’s satisfaction.

Today, CDR had a meeting with Nick Weatherby, a staffer for Congressman-elect, Dan Maffei. Diane, Terrie, Dean, Gene, and I attended, and though the focus of the meeting was the Community Choice Act, we spoke on a number of issues that affect people with disabilities.

Diane and I spoke about the Community Choice Act. I gave a brief history of the 17-year odyssey, and noted that CCA now has 125 co-sponsors in the House - more than ever before, and 21 co-sponsors in the Senate. The co-sponsors include 19 of the 22 NY congress members. Diane spoke of the impact that it would have, including the cost savings to states. One of the questions that Mr. Weatherby asked was about opposition to CCA. Diane spoke of the institutional bias inherent in the long term care system, the nursing home lobby, and the myths about the Community Choice Act, including what is known as the “woodwork effect”, which studies have shown would not happen. I spoke of a group of parent advocates called VOR (Voice of the Retarded), who oppose CCA because they support institutions for people with intellectual disabilities. They are tight with AFSCME, the union that many employees of institutions and nursing facilities belong to, and who also is opposed to CCA.

Diane also presented CDR’s Long Term Care position paper and other materials for study and reference.

Nick Weatherby stated that the congressman most likely would support CCA in its present form, and further stated that they are always available to us. He spoke of another staffer who has a young child with developmental delays, and how that has made them aware of some issues affecting people with disabilities.

Dean spoke of issues of concern to people who are Deaf, such as the Twenty-first Century Communications and Video Accessibility Act of 2008 (H.R. 6320),which would make changes to the Communications Act of 1934, to define “disability”, require seamless text communication among interconnected VoIP services, IP-enabled communication services, and telecommunications services, and establishes an accessible products and services clearinghouse. He also spoke about closed captioning, and how the federal funding for closed captioning that local TV stations received was no longer available. Another issue that Dean spoke of was bilingualism-teaching Deaf students ASL, along with English, instead of English only.

Gene spoke about the need for affordable, accessible, integrated housing, and recounted the story of a woman with Multiple Sclerosis who lives at Monroe Community Hospital. She went there for disability-related health problems, and got better, but due to credit issues related to her enormous medical bills, was unable to find an apartment. She is languishing in the hospital at a cost of over $6,000/month, when all it would take is $600/month for her to be in the community! We also spoke of a piece of legislation that was introduced in the House called the Inclusive Home Design Act of 2007 (H.R.4202). This would require all newly constructed, federally assisted, single-family houses and town houses to meet minimum standards of visitability for persons with disabilities. Visitability, simply put, is the construction of a home with at least one no-step entrance, doors that are at least 32 inches wide, lowered light fixtures and other environmental controls, and a wheelchair-accessible bathroom on the first floor.

Nick Weatherby stated that he would look into those pieces of legislation (H.R. 4202, and 6320) to better educate himself, and the congressman, but felt that very likely, Rep. Maffei would be a supporter of those bills, as well.

I felt that the meeting went well, and that Mr. Weatherby seemed genuine in his optimism, and look forward to working with him and Representative Maffei in the future.

I had an incident happen to me at a local grocery store called Tops Friendly Market. The explanation is in the e-mail that I sent out to everyone in the office, and some folks in the community. Here goes:

Hello Everyone!

Have you, or your consumers, or your constituents ever gone to a grocery store and found that you couldn’t get inside because the poles surrounding the store were to narrow for your wheelchair to get through, and the gate was locked?

This happens more often than we realize, especially in economically depressed, or poor neighborhoods. What the stores are trying to do is prevent the theft of the shopping carts, which they say are quite expensive. One way of preventing theft is to put closely spaced bars around the store, and install a gate in the midst of the bars so that someone who uses a wheelchair can enter. They then assign someone to watch the gate.

The problem arises when the person assigned to the gate is not there to open it, and the person using a wheelchair has to wait for someone to come open it. This happened to me recently. I went to the Tops Store located at Clinton and Upper Falls Blvd around 9:00 am on Saturday, December 6, 2008. When I arrived, the gate was locked. My partner went into the store to look for someone while I waited in the cold. I watched as people who were able to walk slipped between the bars and entered the store, while I had to wait. The unfairness of this hit me on a number of levels-I, a middle-aged African-American woman in a wheelchair, waiting at the Jim Crow entrance.

When I was finally able to get in, I spoke with the store manager, who explained that the person who was supposed to open the gate called in sick at the last moment, and the person who replaced him went and did some other duty. I invited him to meet with us to come up with some ideas on how to achieve access fairly. I believe that access and security are NOT mutually exclusive. People with disabilities should have real access to businesses. Sometimes, mere accommodations do not work. Access is the key to equality!

Representatives from Tops will be here at CDR on Monday, December 22, 2008, at 9:30 am. Join us to let them know how important true access is to you, and give them some ideas on how to make this happen. Let me know if you’ll be able to come. Contact me at 585-546-7510 or acameron@rochestercdr.org. We are located at 497 State Street, and are accessible to folks who use wheelchairs.

Together, we can create change!

Thank you,
Anita

RA’s note: We have had some awful weather in Rochester over the weekend, so the meeting date has been changed to Monday, December 29, 2008 at 10:00 am at CDR. We will be meeting with Robin Perrone with Customer Service, and Rocco Marcellino, the store manager whom I’d previously spoken to.

You know, there’s something about all this that gets to me. In talking with people at CDR, and in the community, as well as the folks at Tops, this issue has been going on for a long time, and the way that other grocery stores have dealt with this is to move out of the area. Here in Rochester, there is really only one grocery store that people can go to in the Downtown area, and it is that Tops store where I had the incident. As noted in the letter above, the corralling of grocery carts typically occurs in low income neighborhoods, though not always. There is a Tops store near CDR that doesn’t have the cart corrals. What bothers me is when everyone keeps saying that they have to do it that way, or they’ll have to move out of the area. Tops officials have told me that the cart are expensive, about 6,00 dollars apiece, and so they can’t afford to lose them. Further, they say that each time one of their shopping carts is found by the city, they are fined. Therefore, they have to corral them. Ok, I don’t have a problem with that. My problem is that they have chosen a security solution that inhibits access to the store by folks who use wheelchairs. They feel that it is cheaper to have the gate there, and pay someone to be there, then to adopt a security method that may cost a bit more, but is more effective, and won’t impede access. What is especially galling is that Tops is crying poor, but they have 158 million dollars available for renovations!

One of the things that we hope to accomplish is to brainstorm ways to come up with a security system that is cost effective, yet accessible to people who use wheelchairs. Barring that, the only thing that we can resort to is the Americans with Disabilities Act, which has several sections related to this issue:

Title III of the ADA governs public accommodations and services operated by private entities. This includes shops, hotels, theaters, gas stations, and restaurants, and other businesses. Section 12182 of Title III states that:

“No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation.”

“An individual or entity shall not, directly or through contractual or other arrangements, utilize standards or criteria or methods of administration
(i) that have the effect of discriminating on the basis of disability; or
(ii) that perpetuate the discrimination of others who are subject to common administrative control.”

For purposes of subsection (a) of this section, discrimination includes

(i)  the imposition or application of eligibility criteria that screen out or tend to screen out an individual with a disability or any class of individuals with disabilities from fully and equally enjoying any goods, services, facilities, privileges, advantages, or accommodations, unless such criteria can be shown to be necessary for the provision of the goods, services, facilities, privileges, advantages, or accommodations being offered

I was told by the Department Of Justice that this ADA provision could be applied to our case, particularly since the accommodations offered are ineffective. I know that in at least one other city, people with disabilities have prevailed in this issue.

More to come…

Its been so busy around here, it isn’t funny! I helped to do our 704 report, the yearly report to the feds on what our ILC (independent living center) has done over the past year. My area was, of course advocacy. Even I am amazed at all of the things that we have done. I won’t go into it because I’ve blogged about it here already.

Right on the heels of that was the budget.  Each year, the Center for Disability Rights does an analysis of the Governor’s budget. This year, for the first time, I was able to help out with that. I scoured the Transportation portion of the budget, and though there will be cuts to the individual Transit Authorities, it will be up to them to determine in what areas the cuts will occur. For those folks in New York City with disabilities, the cuts will have a potentially devastating effect because several bus lines are being cut, and those are the wheelchair accessible lines. New York City’s subway system is barely accessible to folks who use wheelchairs, so these proposed bus line cuts are frightening a lot of folks!

There are other things going on, but I’ll post those seperately.

Here’s some recent thoughts of mine that may show up in much refined form on the CDR Blog one of these days…