Get Out in the Community! -by Louis Patrick

Get Out in the Community!

Being part of the community is worth the struggle

by Louis Patrick

My wheelchair is five years old, so, theoretically, Medicare would approve my getting a new one. I talked to the company I’ve been dealing with for several years, and we agreed on the specifications for a new chair. I should have known things are never so easy. I got a call last week from someone in the company telling me that Blue Cross had turned me down. They needed more information—preferably medical, of course. He said the company would re-file.

It’s been my experience that it’s not wise to leave such matters unattended. I called BCBS’s “customer service” line and asked to speak to someone in the group who had denied my claim.  The sweet young rep explained that she couldn’t do that; they had different phones. She looked up my records and told me that, yes, my claim had been denied, they didn’t have enough information to establish that I needed an ultra-light chair, but that I had the right to “appeal.” They had not received an appeal from the company yet. She called them and found out they had not have received the denial by mail yet; she would fax it to them. If I liked, she could fax or mail the appeal application to me, but, no, they aren’t allowed to use email.

Now, first thing, I’m 68 years old, as is my wife. Silly me, that alone seems like reason enough; nobody my age should have to lift a tank of a wheelchair. I didn’t think to tell the rep that, however. I did tell her that I’m very active; I’m out and about very often through the week. I drive and need to be able to get my chair in and out of the car easily. Also, my wife needs to be able to get the chair in and out of the trunk when she and I are riding together. And I reminded her that being active in the community, dealing with other people, is a well proven tonic for health. Staying bottled up at home alone is a killer.

Insurance companies are great believers in Nancy Reagan’s philosophy: “Just say no.” Whenever possible, deny claims. Adjudicate. Wrap up the claim in red tape. Many, if not most, people will simply accept the denial. I was at the [Memphis Center for Independent Living] talking about this with a good friend. She had just been denied payment on a feature that reclines the chair, taking pressure off the tush. She was told she was eligible for a “Group 2” chair but not a “Group 3” chair. Again, to be active in the community for several hours the reclining feature is very helpful—and healthful.

I’ve also heard before that Medicare was clamping down on heavy duty wheelchairs unless needed IN the home. This is a straight-forward matter of health: Get out of the house! Get out in the community! It’s better for you.

Never take no for an answer. Fight for the equipment you need to stay active.

EDITOR'S NOTE: Louis Patrick died June 1, 2017. He was a long-time member of the Board of MCIL. He wrote this for the MCIL Journal and the benefit of our community back in 2015.

Learning about ADAPT

My first experience with the disability rights group ADAPT

By Timothy Redd
From March 13th through the 18th I was in our nation’s capital participating in ADAPT’S Spring Action. 

What is ADAPT? 
ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.

On Sunday, May 14, I attended a morning meeting informing me about the rules and procedures of an action, the history and many victories of ADAPT. Everyone learns about how to be involved in non-violent civil disobedience.

We lined up and took to the streets marching together to Upper Senate park for the annual ADAPT Fun*Run for Disability Rights. It's a time where everyone wheels or walks laps for sponsors who have donated to this cause.
There were speeches, fellowship, and lots of meeting and greeting. We also honored women and our mothers this Sunday in a very moving bit of theatre.  

The second day, Monday, May 15, we marched to the White House as people chanted with us and applauded. I was touched when a saxophonist played “We shall overcome” as we passed by. We protested at White house demanding the Trump administration:

• Publicly acknowledge that the Americans with disabilities are being denied their Constitutional rights to life, liberty and due process when they are denied Medicaid Long Term Services and Supports and forced into nursing facilities and other institutions;
• Demonstrate support for the Liberty of disabled Americans by advancing proposals that promote their community integration, such as Independent Living, MFP and Community First Choice.
• Issue a statement that the President and his administration support the Disability Integration Act, bipartisan legislation that ensures no disabled individual is denied their Constitutional right to liberty by requiring people with disabilities be provided a community-based alternative to institutional placement that allows them to lead an independent life.
• Designate Ivanka Trump as the Trump Administration’s “Ambassador for the Disability Community” and, during the next year, send her to visit ten model programs for transitioning people with disabilities into the community, convene round-tables in ten states to support them in developing effective systems for truly integrating people with disabilities, and work to advance the Disability Integration Act; and
• Convene a meeting between the Disability Community – represented by ADAPT and the members of the National Disability Leadership Alliance – and key officials in the Trump administration, including the Secretary of Health and Human Services, the Secretary of Housing and Urban Development, the Department of Labor and the US Attorney General to end the forced institutionalization of disabled Americans.

Over 80 ADAPT activists were arrested for civil disobedience at the White House while several women of ADAPT camped outside and protested on the lawn of Ivanka Trump. The women blocked the street and chanted until Ivanka came home to see the activists supporting mothers and women.
 
The second day of Action took ADAPT to the FDA White Oak Campus in White Oak, Maryland. Activists demanded that Scott Gottlieb, the FDA Director, immediately stop the torture of disabled Americans by finalizing the FDAs proposed rules banning the use of shocking devices. Over 80 ADAPTER’S were arrested at this site as well.

The United Nations has condemned as torture the use of “aversives” on disabled people who are forced to attend the Judge Rotenberg Center (JRC) in Canton, Massachusetts. ADAPT held a protest last October in which over 200 advocates occupied the entrance to the JRC. ADAPT is known for its work to end institutionalization and its promotion life in the community and its leadership see this as part of that larger project.

“We cannot stand idly by while our brothers and sisters at the Rotenberg center are tortured right here on American soil,” Said Bruce Darling an organizer with ADAPT. “No person should be tortured just because they are disabled, which is what the FDA is allowing by refusing to ban these devices!”

The so-called ‘aversives’ that JRC uses include painful electric shocks from a device more powerful than a police taser, to control disabled people's behavior and punish them for something as small as getting out of seat without permission. Jennifer Msumba, a JRC survivor, has called the shocks “a stinging, ripping, and pulling pain that froze time.”
In 2014, the FDA proposed regulations which would ban the use of these electrical shock devices. The FDA has failed to finalize the rule, however, despite significant public comment from the disability community. 

Our final day of action ended with direct grassroots support for disability rights. In order to rally your elected officials sometimes you have to meet them on their territory. I talked to Bob Corker’s, Steve Cohen’s, and Lamar Alexander’s staff. I asked them to support the Disability Integration Act (DIA) Senate Bill S 910 and House Bill HR 2472.
Attending an ADAPT action is a life changing experience. People with disabilities took over the city and let everyone know that disability rights are civil rights; especially elected officials. 

Anytime you are different in the world, it's a fight. To see an entire community of people with disabilities having a good time and supporting each other really is affirming to me. We are meant to be whom we are. Human rights are disability rights. There is much work to be done to reach liberation for all people and there is equality for all. 

There is something we can all do to help humanity. We can write senators and representatives. We can donate, volunteer, speaking up, help out, giving back, or march in the street. 

Good work is just good work.  I have to say I had many reservations about going to an action. Action days are grueling and it’s no way to describe an ADAPT action. I enjoyed meeting so many people and also talking to congressional and senate staffers the most.  

The biggest surprise in all for me was how well the actions are organized with safety being a chief concern and that I manually pushed myself for miles all across DC. 

One event stands out; as I was in the Rayburn building, I looked down the hall and I saw Congresswoman Maxine Waters. It was a pleasure to talk to her and get a picture as well. 

We the community of people with disabilities are powerful when we come together and there is no greater testament of that power until you experience an ADAPT party. To see so many enthusiastic people fighting for our civil rights was humbling, eye opening, and exciting. 

To learn more about ADAPT you can access the official website at adapt.org. If you interested in becoming a member of ADAPT or learning more group meetings are held every Friday here at MCIL at noon.

Clift’s Notes

NFB Legislative News

By Christina Clift, MCIL Consumer Advocate
During the May meeting of the Memphis chapter of the National Federation of the Blind, members were updated on the status of our current legislative efforts in Washington.  We have made great progress on all of our legislative issues. We are up to seventeen cosponsors on AIM HIGH, H.R. 1772, five cosponsors on the Access Technology Affordability Act, H.R. 1734, and seven cosponsors on the TIME Act, H.R. 1377. In the Senate, the Access Technology Affordability Act, S. 732, has one cosponsor.

Congress will be in session all next week before taking their one-week Memorial Day recess.  Please contact your representative and ask them to cosponsor H.R. 1772, H.R. 1734, and H.R. 1377. Don’t forget to contact Senator Alexander and Corker and ask them to cosponsor S. 732. The best way to contact your member of Congress is to call the Capitol Switchboard at (202) 224-3121 and ask for the office in question. Emailing your member of Congress is also a good idea. So pick up your telephone and help us get our Tennessee representatives on board! Finally, you may also want to request a meeting with your member of Congress while they are back at home during the week of Memorial Day.

In other meeting news, the Memphis chapter in partnership with Clovernook Center for the Blind and Visually Impaired, Tennessee Association of Blind Athletes Memphis, and the Veteran’s Administration will be walking across the Big River Crossing during October as part of the Federation’s Meet the Blind month campaign. Other activities will include our White Cane Awards Banquet and fall picnic.  More details will follow.

Next, the outreach and public relations committee will begin working on increasing our chapter’s social media presence on Facebook, Twitter, and other platforms, participating in possible radio interviews, and creating a brochure or flyer for outreach events.  They will also be working on trainings for local businesses on how to better serve individuals who are blind or low vision.

Finally, our chapter meeting ended with a presentation by Strong One and Sky Ways Transportation.  They are small transportation providers in the Memphis area who serve individuals with disabilities.  Both businesses base their fares on the amount of miles traveled and take reservations on a first-come first-served basis.  For more information you can contact Strong One Transportation at (901) 833-7152 or Sky Ways Transportation at (901) 691-1578.
Our next chapter meeting will be held on Saturday June 17, 2017 at 1:00 PM. For more information on how you can join and become a part of our movement, you can contact us at (901) 213-6270 or via e-mail at memphis@nfb-tn.org.  You can also visit our website at httP://www.nfb-tn.org.

Bill Summaries

Accessible Instructional Material in Higher Education Act, H.R. 1772 (AIM HIGH)
This bill will promote instructional technology and content that are accessible to the blind and other students with print disabilities.

Access Technology Affordability Act of 2017, H.R. 1734 and S. 732 (ATAA)
These bills will facilitate the purchase of access technology for blind people by creating a refundable, per person tax credit. Read the Access Technology Affordability Act of 2017 fact sheet to learn more.

Transitioning to Integrated and Meaningful Employment Act of 2017, H.R. 1377 (TIME)
This bill will increase employment opportunities by removing stigmas and low expectations propagated by section 14(c) of the Fair Labor Standards Act. Note that the bill now phases out subminimum wages over a six year period corresponding to the recommendation of the National Council on Disability. Read the TIME Act fact sheet to learn more.
 

Current Cosponsors Listed Alphabetically By State

Accessible Instructional Material in Higher Education Act, H.R. 1772 (AIM HIGH)

Rep. Roe, David P. [R-TN-1] - Sponsor
Rep. Young, Don [R-AK-At Large]
Rep. Garamendi, John [D-CA-3]
Rep. Courtney, Joe [D-CT-2]
Rep. Murphy, Stephanie N. [D-FL-7]
Rep. Hanabusa, Colleen [D-HI-1]
Rep. Kinzinger, Adam [R-IL-16]
Rep. Krishnamoorthi, Raja [D-IL-8]
Rep. Brooks, Susan W. [R-IN-5]
Rep. McGovern, James P. [D-MA-2]
Rep. Kildee, Daniel T. [D-MI-5]
Rep. Harper, Gregg [R-MS-3]
Rep. Thompson, Bennie G. [D-MS-2]
Rep. Stefanik, Elise M. [R-NY-21]
Rep. Price, David E. [D-NC-4]
Rep. Thompson, Glenn [R-PA-5]
Rep. Gonzalez-Colon, Jenniffer [R-PR-At Large]
Rep. Sensenbrenner, F. James, Jr. [R-WI-5]

Access Technology Affordability Act of 2017, H.R. 1734 and S. 732 (ATAA)

Rep. Young, David [R-IA-3] - Sponsor
Rep. Roybal-Allard, Lucille [D-CA-40]
Rep. Bilirakis, Gus M. [R-FL-12]
Rep. Hanabusa, Colleen [D-HI-1]
Rep. Moulton, Seth [D-MA-6]
Rep. Smucker, Lloyd [R-PA-16]

Transitioning to Integrated and Meaningful Employment Act of 2017, H.R. 1377 (TIME)

Rep. Harper, Gregg [R-MS-3] – Sponsor
Rep. Calvert, Ken [R-CA-42]
Rep. Swalwell, Eric [D-CA-15]
Rep. Schakowsky, Janice D. [D-IL-9]
Rep. Pingree, Chellie [D-ME-1]
Rep. Lujan Grisham, Michelle [D-NM-1]
Rep. Kaptur, Marcy [D-OH-9]
Rep. Gonzalez-Colon, Jenniffer [R-PR-At Large]

MICAH begins local organizing effort

MCIL adds accessibility to the community ideal

By Tim Wheat
The group MICAH is organizing to make Memphis a just and equitable community. They met last night at the Clayborne Temple downtown to work on the general areas of concern: Poverty, education and crime. MCIL was there to make sure that accessibility is part of the mission.

Emma Johnson explained the process for the evening's meeting. MICAH was holding a “world cafe” to capture conversations of diverse groups of Memphis residents. Each table of four to six had a host who remained seated at the tables while the participants moved around to mix-up the thought process. Most of the table hosts were members of MICAH’s executive committee.

The auditorium of the Clayborne Temple is still being renovated and a large section of the ceiling had no plaster. The original lathe boards were visible and one large exposed brick column was unfinished to the left of the stage. Tracy Spencer, the president of MICAH, told everyone that the iconic I AM A MAN posters that sanitation workers used in the 1968 campaign for equality were made in the Temple.

Emma Johnson explained how the world cafe works and gave participants suggestions and etiquette to guide in the discussions. She told about the concept of “listening to the middle,” as a way of seeing deeper connections and shared themes. Ms. Johnson also explained to participants some cafe etiquette to ensure listening, speaking from the heart and focusing on the topic. But overall, Emma Johnson asked participants to play and have fun.

The first question for the MICAH World Cafe was: What would a just Memphis look like? At various tables people generally spoke of housing, real desegregation and a sense of community. More directly, one participant said that a just Memphis would mean people walking everywhere; children playing with neighbors and people out of their homes engaged with others in the community. The vision included people using public transportation and being less dependent on cars and people with disabilities being fully and equally engaged in the public sphere.

Another question the world cafe dealt with was: What will it take for Memphis to become a just community? Ms. Emma Johnson asked participants to phrase the question like this:

“If Anderson Cooper were to come to Memphis to do a story on how the city became a just community,” she said. “What would you tell him was the important action that MICAH had taken to create a just city?”

One table gave the standard answers, education, housing and transportation. But the host challenged those responses as more of the same and would not result in a just community.

“What if,” the table host said, “Memphis organized 100 agencies with thousands of people to make a difference. Could one or two hundred thousand people make a change in this city?”

The challenge made participants in the world cafe think of real power. The standard options generally required money, but organizing for justice could guide how public money is spent. People can demand and guide solutions.