Disability Futures

Senator Tom Harkin discusses the DNC's 2016 platform on disability, Hillary Clinton, Tim Kaine, and the Disability Housing Integration Act at the Disability Council meeting at the 2016 Democrat National Convention in Philadelphia. 

The English woman is reported to be the oldest woman in the world with Down syndrome. This Sunday, she will turn 75 years old.

Defying all odds, Gillett battled breast cancer and tuberculosis, each within the last 12 years.

According to reports, Gillet was born in 1941, when the average life expectancy for someone with the condition was their mid-20s.

As someone who loves film, it’s dismaying to find such an uneven range of films about disabled people. There are the treacly, Oscar-bait films that follow every inspirational trope and played by non-disabled people. Some of those films in the inspirational category are patently ableist andsend dangerous messages about disability *cough, Me Before You, cough.*  There are the mediocre ones that may be ‘about’ disability’ and created by disabled people that are just *meh.* And then every once in a while there are awesome films that “get” disability culture with nuance and complexity like this year’s Finding Dory by Pixar.

Celebrating their 30th anniversary, Superfest is the world’s longest running disability film festival, celebrates disability as a creative force in cinema and culture. Presented by the Paul K. Longmore Institute on Disability and the LightHouse for the Blind and Visually Impaired, the festival will take place on October 22nd in Berkeley and October 23rd in San Francisco.

Last week we shared six tips on developing intentional networks:

1. Align around shared purpose and values
2. Know the stage of your network
3. Act intentionally to strengthen your network
4. Hold each other accountable to working like a network
5. Wait to add structure until you need it
6. Don't underestimate the challenge

This week we dive into the final three. Let's go!

Hold each other accountable to working like a network

Networks are very different from the typical hierarchies we're used to working in. And since they're so different, it's easy to fall back into traditional patterns of authority and top-down decision making.

Our only protection against relapsing to old behaviors is to have a clear definition of what it means to "work like a network" and to hold each other accountable for behaving like one.

So what does it mean to behave like a network?

The term we use to describe networks of this type is intentional networks. June Holley, author of The Network Weavers Handbook and long-time practitioner of all things networks, describes an intentional network as:

...a network of people and organizations that are working on the same issue or vision, together with structures that have been created to mobilize the energy of the organizations.

Whether you're thinking of launching a new network or you're neck-deep tending to an existing one, here are a few tips to guide the development of your intentional network:

“You need to voice more.” 

The words catch me off guard, and it takes me an extra second to process them.

“I’ve heard you voice, I know that you can.” 

I sign back, “Sometimes,” and this is met with the weary expression of someone I realized, later, did not understand that this was not the “sometimes” of choice. 

I will save another post for the camp I had the opportunity to work at this summer that prompted this request (it has been very exciting and I’m honestly a little sad that this is the last week). The camp itself is for deaf and hard of hearing students, who all have very different experiences of Deafhood: mainstreamed, deaf school, signer, voice, hearing aid user, cochlear implant user, no devices. 

Obviously, it is difficult for me to understand any sort of voicing, as even with hearing aids (that i no longer wear most of the time), there are some delays in auditory processing, shipping, and handling. Specific kinds of repetition help best, but with some voices, no amount will help. Last year, after another hour of repeating back what sounded like gibberish and clicking buttons even when I couldn’t tell whether my ears or the machines were ringing, I recall my audiologist telling me that my speech comprehension had gone down. She recommended wearing my hearing aids more often and listening to people talk to me. 

This was something that I really only did regularly during therapy sessions, or talking to my non-signing sister, or watching movies to which I really wanted to hear the accents and music (though when I referenced “mentally subtitling when I know what’s being said,” a friend pointed out to me, to paraphrase: “if you need to touch something to see it, you’re blind, and if you need captions to hear, then you’re deaf”). 

I grew up with a complicated relationship to my Deaf identity. My family is Deaf, but I was embarrassed of ASL as a child because I did not know many other children whose families used it (two families from my mother’s church did, but I felt disconnected from these children). As a result, I did not begin learning ASL until I enrolled at Gallaudet, and three years later, I still feel awkward as a signer but consider myself fluent. My receptive skills are slow, yes, but this will probably not improve over time, as it is just a part of how I experience neurodivergency.

 

In the 21 schools in the Val Verde School District, a child who has a disability has a guaranteed seat right next to a child who doesn’t.

It’s one of the reasons the district of 20,000 students in Southern California has high school graduation rates that top the national average, said Val Verde School Superintendent Michael McCormick.

In Val Verde, 72 percent of students with disabilities graduate from high school. That is more than double the 29 percent rate for students with disabilities in Washoe County in 2015.

A two-year investigation by the Reno Gazette-Journal shows that the Washoe County School District is failing to educate — and in some cases has abused —  children with disabilities. The investigation found that the graduation rate is far below the national average of 63 percent, a mindset of low expectations exists and the district has more than 200 segregated classrooms for students with disabilities.

The Reno Gazette-Journal reached out national experts to find takeaways from districts that are succeeding in educating students with disabilities. These districts all have graduation rates that are higher than the national average.

Libraries are uniquely positioned to see changes in our regular users. We have people who come in all the time, and we can see changes in their behavior, mood, and appearance that others who see them less often would never recognize. Likewise, libraries and librarians are trusted entities–you may have people being more open and letting their guard down with you in a way that lets you observe what’s happening to them more directly. Finally, people who work in libraries generally really care a lot about other people–and that in-built sensitivity and care can help when seeing a change in someone’s mental health and abilities.

I’m going to do my best to sum up what I learned at the training as well as what we’ve seen here in our Library serving older adults with memory issues. I hope some of this can help you at your library too.

How do memory disorders usually make themselves visible?

As each of us ages, our memories get less and less reliable. Typical changes can include forgetting an occasional appointment or bill due date, forgetting words, and losing things. Changes that indicate something more progressed is happening in someone’s mind include disruptions to daily life, changes in personality, withdrawal from work or friends, poor judgment, misplacing things frequently, difficulty solving problems, confusion  about when and where you are, and trouble with spatial relationships or speaking and writing.

How might these memory disorders present in a library environment?

People will think they are in another library, another city, or another time period. They may confuse library staff for a relative of theirs. They may become upset, not remembering how they got to the library. They may repeatedly come to the library on the wrong day for an event. They may tell staff that their library card must have been stolen because they don’t remember checking out the items on their account. They may become angry and frustrated when you present them with the “correct” information. They may need to be shown the same basic procedures repeatedly, always as if for the first time. They may become uncharacteristically verbally abusive to staff or other library users when frustrated. They may pace or wander seemingly at random. They may repeatedly ask the same questions during the same short window of time. They may look and behave completely normal. One never knows for sure.

My brother and I sat in stiff chairs in a government office, a clipboard of paperwork in front of us. He’d recently moved, and we were there to sign him up for health care. Flipping through the papers, he came upon a voter-registration form.

“People like me can vote?” my brother asked.

I had to look away from him for a moment so that I wouldn’t cry in the middle of the waiting room. Like millions of Americans, my older brother lives with a disability. He was diagnosed with schizoaffective disorder, which means he hears voices and battles mood fluctuations. He also struggles with some learning disabilities that resulted when doctors used forceps to help deliver him as a baby. Thanks to good doctors, medication and a remarkable day program, he is doing well. He is strong, compassionate and funny. He watches the news and is well informed; we’ve discussed the Islamic State, North Korea, the poor, jobs, what to do about the homeless and the presidential campaign. But he didn’t know he could vote.

When I was certain I could answer him in a steady voice, I responded. “One hundred percent yes. You can vote,” I said. “As long as you haven’t been declared incompetent by a court of law, you have the same rights as I do and everyone else in this country. Fill it out, and we’ll vote together on primary day.”

My brother wrote his name and address, and he even checked the box marked “Democratic Party.”

“Congratulations,” I said. “You’re a registered voter.”