Building Bridges: DCM and Libraries

What Libraries and Centers for Independent Living Can Learn from Each Other

By Christina Clift

Last week, Karie Doss and I traveled to Montgomery, Alabama, to attend the Association for Rural and Small Libraries Conference. It was an eye-opening opportunity to step into the world of librarians and learn more about the challenges they face every day. I came home with an even greater appreciation for libraries—and with a stronger belief that libraries and Centers for Independent Living have much more in common than we might realize.

We were there as part of Disability Connection Midsouth’s participation in the Collaborative Access for Rural Empowerment, or CARE, Project. CARE brings together rural librarians, Centers for Independent Living, the Association of Programs for Rural Independent Living, the Association for Rural and Small Libraries, and the Rural Institute for Inclusive Communities. During the first year, participants have worked together to develop resources that will help libraries and Centers for Independent Living form stronger partnerships and better serve people with disabilities in rural communities.

As we end year one, we are moving from planning and developing ideas toward putting those ideas into practice. Beginning in October, the project will enter an exciting new phase as we begin implementing, testing, and learning from the resources we have created. The CARE materials are designed to help organizations assess their communities, build relationships, share expertise, improve accessibility, and develop programs together.

More Alike Than Different

One of the things that struck me during the conference was how similar libraries and Centers for Independent Living really are. At Disability Connection Midsouth, we call the people we work with consumers. Libraries call them patrons. Whatever word we use, both organizations are trying to create places where people know they belong.

Libraries connect people with books, technology, information, programs, internet access, and community resources. Centers for Independent Living connect people with information, advocacy, peer support, independent living skills, transition assistance, and community resources. We both believe people should have access to the information and tools they need to make their own choices and participate fully in their communities. Those shared  goals—serving the community, connecting people with information, promoting inclusion, building relationships, and creating opportunities for participation—are at the heart of the CARE partnership. 

Andrew Carnegie once said that a library “outranks any other one thing that a community can do to benefit its people.” After spending several days with rural and small-library professionals, I understand that statement in a new way.

My Complicated Relationship with Libraries

Growing up, libraries were places that I loved and disliked at the same time. I have always loved to read. I loved the idea of being surrounded by shelves filled with stories, information, history, and possibilities. But as a blind person, most of those shelves were not really available to me.

Other people could walk through the stacks, pull a book from a shelf, read the back cover, flip through a few pages, put it back, and choose another one. I couldn’t browse independently in that same way. Most of the books were in regular print, so my choices were often limited to a much smaller section of large-print books or audiobooks.

The library welcomed me, but the collection itself often reminded me that being present is not the same thing as having equal access.

That experience is one reason accessibility matters so much to me today. Inclusion is not simply opening the door. It is asking whether everyone who comes through that door can actually participate, explore, communicate, learn, and make choices.

As Maya Angelou said, “In diversity there is beauty and there is strength.” That strength only grows when diversity is not merely acknowledged but included.

Libraries Are More Than Books

Libraries are also safe places. For a period of time, I waited for my ride every day after work at the Frayser Library. It was a dependable place where I could sit safely until my transportation arrived.

For many people, libraries serve that same role in ways the rest of us may never notice. They are places to warm up on a cold winter day or cool down when the Memphis summer becomes unbearable. They provide internet access to someone applying for a job, a quiet place for a student to study, help for someone trying to navigate an online form, or simply a welcoming place for a person who has nowhere else to go.

Centers for Independent Living often serve a similar purpose. People may initially come to us looking for housing information, help understanding a service, assistance with transportation, or someone who understands what it is like to live with a disability. Sometimes what they need most is a place where they are treated with dignity and where disability is understood as part of the human experience rather than something that makes them less valuable.

Shared Challenges—and Shared Opportunities 

Unfortunately, libraries and Centers for Independent Living also share many of the same challenges.

We struggle with staffing. We compete for limited funding. We constantly look for better ways to reach people who may need our services but do not know we exist. Rural communities face additional barriers related to transportation, distance, limited resources, and fewer service providers.

We also operate at a time when organized efforts in communities across the country are challenging diversity, inclusion, equity, and access. Libraries may experience those pressures through challenges to books, programs, displays, or efforts to welcome historically excluded communities. Disability organizations continue working against barriers that limit whose voices are heard and who gets to participate.

Both of our movements understand something important: community spaces should belong to the whole community.

That is why the CARE Project makes so much sense. Disability Connection Midsouth is based in an urban area, but our service area extends beyond Memphis. Through CARE, we hope to strengthen our presence and relationships in Tipton, Fayette, and Lauderdale Counties, where rural residents with disabilities may have fewer opportunities to connect with disability-specific resources.

A local library may already know people we have not been able to reach. We may have disability expertise that can help a library improve accessibility or create a new program. Rather than building separate systems, we can build something stronger together.

As Helen Keller put it, “Alone we can do so little; together we can do so much.”

That sentence captures what CARE is really about. Year one has been about listening, learning, sharing ideas, and building the tools. October begins the next chapter: putting those ideas to work in real communities. The project will also begin connecting people through the Rural Independent Living and Libraries Peer Network. We are excited to see what happens when librarians, disability advocates, consumers, patrons, and community partners begin building those bridges together.

Because sometimes the resources a community needs are already there.

We just have to connect them.

Looking Back 25 Years Ago Today

Disability Rights Activists Demand Jerry Lewis Stop the Pity Routine. 

A dozen people with disabilities picketed the Jerry Lewis Muscular Dystrophy Association (MDA) Telethon outside the Libertyland Creative Arts Building.

EDITOR’S NOTE: Twenty-five years ago today, Deborah Cunningham, the Executive Director of DCM (at the time called the Memphis Center for Independent Living) led a protest for the dignity of people with disabilities. “Our community has changed a lot because of progressive ideas that brave activists had back then,” said Tim Wheat who was at the protest 25 years ago. “Respect and the inherent right of everyone be valued was not as clear as it is today, but we still have barriers to overcome.”

By Tim Wheat 

9/3/2001 

A dozen people with disabilities picketed the Jerry Lewis Muscular Dystrophy Association (MDA) Telethon outside the Libertyland Creative Arts Building. Activists in Memphis and around the U.S. are asking that Lewis be removed from his position as chairman of the MDA, and asking the MDA stop using misleading stereotypes of people with disabilities in its fundraising.

 

"If it's pity we'll get money," said comedian Jerry Lewis in a national television interview. "Pity? You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house." 

Both the MDA and Jerry Lewis apologized for those comments, yet the annual telethon did nothing to modernize their fundraising model. 

"[Jerry Lewis speaks as if] without these charity events we wouldn't have much hope," said Deborah Cunningham in an interview with Channel 13. "I resent that." 

Demonstrators held that pity is not necessary to raise money for medical research and it is only the force of Mr. Lewis' personality that keeps the MDA using outmoded exploitation of children and an appeal to pity to raise money. 

"Pity is an outdated and condescending approach that hurts all people with disabilities; it contributes to our being underestimated by employers, educators, and society at large," said Alan A. Reich, President National Organization on Disability this past August. "I hope that soon the MDA Telethon will be an event that celebrates potential and urges people to donate for the right reasons -- educating the public, research for new treatments, providing opportunities, and breaking down negative stereotypes -- but that disavows the harmful approach of giving money based on sentiments of pity or guilt." 

Security Director Leonard Porter gave the protestors an ultimatum that they will have to move from the Libertyland property. "Okay," responded Deborah Cunningham, the Executive Director of the Memphis Center for Independent Living, "we are not moving." Director Porter consulted with Libertyland staff for approximately 10 minutes before he returned to tell the group that he is withdrawing the ultimatum. 

"I respectfully suggest that Mr. Lewis will raise more money and make a greater contribution to the culture by eliminating pity from his appeal, and by emphasizing the empowerment of people with disabilities to work and to contribute," said Justin Dart, the founder, Justice For All on August 21. "FDR never ran on pity." 

Do you want to live in a Smart Home?

DCM is looking for people who have information about smart home applications or questions about how technology can help you. 

Smart home technology is adding accessibility to many home decisions. It seems that almost every feature of your home can be controlled remotely. And not with just any remote, like the old garage door opener, the remotes may be automated and voice activated. Like in the past when many of us collected three remotes simply to control the TV, cable and VCR, you can have a handful of remote controls to manipulate from afar.

In the late 1980s and 1990s, the Center was a progressive leader in helping to bring remote technology to people with disabilities. In his book, Shielded By God, Franklin Forester tells how he set up a controlling device for people with disabilities. Some people could control multiple appliances with a single switch, or they could make selections with a sip-and-puff control. 

Now, however, there are many additional applications around the home that may be controlled remotely. It is easy to see how these can have an impact on accessibility. And the type of control can add to accessibility. With items connected to the Internet, you can control them from anywhere and with smartphones and applications it may be more accessible than ever. 

Many home tasks that are automated for convenience, can also be accessible for people with disabilities.  Voice-activated assistants like Amazon Alexa or Google Assistant allow individuals with limited physical mobility or dexterity to operate overhead lighting, trigger smart plugs, and adjust window shades hands-free. The convenience for people without disabilities can be access for people with disabilities and accessibility can also be convenient. There is no reason our community cannot also enjoy the convenience that smart home technology can provide. In entertainment and making routine the things you like to do. But, also helping to make the things you do not like to do simpler and easier. 

Midsouth summers bring intense heat and high humidity. Smart thermostats may enable residents to schedule automatic cooling or adjust indoor temperatures. This feature is intended to save energy and money for most homeowners, but for people with disabilities, the convenience becomes access. 

Smart locks and video doorbells are becoming common. They may also eliminate the physical struggle with traditional keys and door knobs. Residents can view visitors on a phone or tablet screen and unlock the front door remotely. Seeing, hearing and speaking to people at your door is becoming very familiar. Unlocking remotely can be the accessible feature of the remote door. But you need the ability to see or hear who you are unlocking the door for. While many people use audio and visual doorbells and the price is coming down, it is the unlocking feature that is typically the most expensive. 

Smart smoke detectors, water leak sensors, and bed-exit monitors provide immediate, automated alerts to off-site caregivers. These applications can help during an emergency, or be part of a safety net while respecting the user's personal privacy.

Planning for access can help you avoid having a different remote or app for each item you add to your home. Some providers will merge accessible smart devices with local support networks.  Smart home technology can offer Memphians of all abilities greater autonomy, peace of mind, and more independence in their own homes.

If you are looking into smart home applications, whether for accessibility or convenience, let us know. We hope to help Memphians find the access they need with independence in mind. Call the Center (901-726-6404) or email us at info@disabilitymidsouth.org

Federal Grant Changes Could Put Independent Living Services at Risk

DCM and Independence adds value to the community

 

By Christina Clift

At Disability Connection Midsouth, federal funding helps us provide services that allow people with disabilities to live independently, advocate for themselves, and participate fully in their communities. A proposed change to federal grant rules could make that work much harder.

The Office of Management and Budget has proposed major changes to the rules governing federal grants. If finalized, the new rules could make it easier for federal agencies to end grants during a funding period, even when an organization is meeting its requirements. They could also allow funding decisions to be influenced more heavily by changing federal priorities. The National Council on Independent Living has warned that the proposal could create instability for Centers for Independent Living, increase administrative burdens, and create uncertainty around advocacy, accessibility, and outreach activities. (National Council on Independent Living)

For Disability Connection Midsouth, this is more than a funding issue. It could affect our ability to plan programs, maintain staff, conduct community outreach, and provide consistent services. It could also make organizations more cautious about speaking up when policies or systems create barriers for people with disabilities. Very simply, the insecurity with the IL grant makes DCM less of a community resource for other programs that develop independence, produce greater self-reliance and save state and local taxpayers money. 

One of the guiding principles of the disability rights movement is:

“Nothing about us without us.”

Centers for Independent Living were created so that people with disabilities could have a strong voice in the decisions that affect their lives. Advocacy is not an extra service—it is a central part of independent living.

Uncertainty in federal funding ultimately affects the people we serve. When community organizations cannot depend on funding that has already been awarded, they may have to delay programs, reduce services, postpone hiring, or make other difficult decisions.

The proposed rule has not yet taken effect, and discussions about its implementation are continuing. Disability Connection Midsouth will continue following this issue and working with our state and national partners to protect the Independent Living Program.

Stable federal funding allows Centers for Independent Living to focus on what matters most: removing barriers and helping people with disabilities have greater choice, independence, and control over their lives.