What a Renowned Pollster Taught Me About Researching Disability Inclusion

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As the RespectAbility Fellows waited in the conference room for a leading pollster to enter the room, the intimidation increased after being told how important this person is.

Stanley B. Greenberg is a world-renowned pollster and New York Times best-selling author. He is known for advising business leaders with a broad knowledge of social and modern economics, along with being a polling adviser to presidents, prime ministers and CEOs globally. He has conducted deep research in more than a dozen countries.

Greenberg visited the RespectAbility office to meet with the Fellows. He previously teamed up with the organization by conducting polling on voters with disabilities in comparison to voters without disabilities. He also conducted a focus group with Republicans who work on Capital Hill and what they know about people with disabilities.

This summer, RespectAbility Fellows will be conducting one-on-one interviews with various stakeholders in three teams: philanthropists or people who work in entertainment or employment in Hollywood and Long Beach, California to learn more about attitudes toward people with disabilities and the stigmas this community faces.

I am part of the Communications team working on diversity and inclusion in Hollywood. My team’s goal will be the increased accurate representation of characters with disabilities and the inclusion of entertainers in Hollywood with disabilities both in front of and behind the camera. About 20 percent of Americans have a disability and just 2 percent of characters on network television have a disability. Furthermore, a person without a disability plays a character with a disability more than 95 percent of the time. Greenberg advised us on best practices in conducting an interview with a member of the entertainment community.

One question he suggested we ask is: What will it take for you to include people with disabilities in shows as empowered, capable individuals?

“Create an environment where people will be comfortable talking to each other,” added Greenberg. He stressed the importance of gaining people’s trust and respecting them, which includes reserving judgment on their opinions.

As a RespectAbility Fellow, I enjoyed learning from Greenberg, who was inducted into the American Association of Political Consultants’ “Hall of Fame” in 2010. He is known as “the father of modern polling techniques,” “the De Niro of all political consultants,” and “an unrivaled international ‘guru.'”

RespectAbility is a nonprofit organization fighting stigmas and advancing opportunities for and with people with disabilities. This summer 15 Fellows are learning from more than 40 guest speakers. Learn more about the National Leadership Program and apply for the next cohort! Contact [email protected] for more information.

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Google Maps Adds Accessibility Features

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On Thursday, Google announced a new initiative that will help people with disabilities find more accessible destinations through Google Maps.

In a blog post by Google product managers Shiva Thiagarajan and Rio Akasaka, the search giant said it will now allow users to add whether or not locations are accessible.

“Many of us take for granted simple things like walking through a doorway, taking the stairs to the next floor, or always having a comfortable seat at a restaurant table,” the post says. “But for tens of millions of people worldwide, those very things aren’t possible unless a place has a wheelchair accessible entrance, elevator or accessible seating.”

Those using Google Maps can add information letting other map users know if a venue has wheelchair-accessible entrances, elevators, seating and parking. So far, accessibility information has been added to over 7 million locations.

To use Google’s new feature, open the business listing (either on mobile or desktop), click or tap on the two-line description and then scroll down to the accessibility section. If the business selected doesn’t have any accessibility information, or you want to add more details, you can select “Know what features this place has?” to let others know how accessible the location is.

Google is not the first company to show how accessible locations are, although it is the largest. In May, Ellen DeGeneres gave 12-year-old Alex Knoll, $25,000 on to develop Ability App, similarly designed to help people with disabilities identify accessible locations. Beyond Knoll’s app, AccessNow — created by Maayan Ziv, who lives with muscular dystrophy — as well as AXSmap — created by Jason DeSilva, a filmmaker with multiple sclerosis — also let users view how accessible places are. 

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How Repealing the ACA Would Hurt My Family With Pre-Existing Conditions

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The revised American Healthcare Act recently passed through the House of Representatives, much to the chagrin of many of the over 56 million U.S. citizens with pre-existing medical conditions. This new act, as well as the Senate bill, would allow states to increase healthcare premiums for individuals with pre-existing conditions and to overturn the “essential benefits” mandate that covers maternity care and mental healthcare. I just have a question to ask — what gives lawmakers the right to control the kind of coverage individuals with disabilities have? Why do they feel that people with pre-existing conditions do not deserve the same level of coverage as those without such conditions?

I come from a family that has members with pre-existing conditions including mental health issues such as anxiety and depression, and physical conditions such as asthma and my own condition, partial trisomy 16. If my dad didn’t get covered through this new law for his asthma, it would be absolutely terrible because his medications cost hundreds of dollars and they are essential for his health and well-being. My mom and I both go to therapy for mental health issues and this new act may not take into consideration the benefits of therapy to feel better about ourselves and live productive and happy lives.

My disability will never go away, and I need to be assured that if I ever do need therapies and treatments for my disability, I will be able to receive such treatments without paying a hefty premium. This current administration does not seem to care about people with disabilities, and I think the bills in the House and Senate prove that completely. It is unfair, unjust, and a slap in the face to the millions of U.S. citizens with disabilities. We need to push our senators to make the best decision for my future, my family members’ futures, and the futures of others with disabilities.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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Thinkstock photo by Designer491.

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The Problem With Those Viral 'Good Deed' Disability Stories

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Every day it seems like I see a deluge of “newsworthy” stories about a typical person and the amazing “good deed” the person has performed for a child (or sometimes adult) with a disability. These astounding efforts are usually simple:

Popular Teen Takes Girl With Down Syndrome to Prom

Coffee Shop Makes Boy With Autism  His Favorite Off-the-Menu Drink

Child Invites Classmate With Wheelchair to Birthday Party

You get the idea, right? While yes, these stories are positive and sweet, how are they news? When did just being a human being become so astonishing? The girl with Down Syndrome is a person — she wants to celebrate at her prom. If the coffee shop made the “special” drink for the boy with autism, the coffee shop already had the ingredients. So isn’t that simply providing for a paying customer? And what is the big deal about inviting a person with a wheelchair to a party?

People with disabilities are people first. People with disabilities are human. Treating people with disabilities like everyone else is called being treated humanely. I am not saying don’t celebrate the good… I am simply asking you to see the person first.

When people or places go above and beyond to make sure inclusivity and justice exist, that is newsworthy. For instance, after I requested it, our local movie theater worked together with me to institute monthly Sensory Movies that are very accommodating for children with autism and sensory issues. Our local city Recreation Department goes above and beyond to create programs for disabilities.

Again, I am not saying not to celebrate the good… I am simply asking you to realize that by putting these stories on such a pedestal, it makes it easy to only see the disability, rather than celebrate the person with the disability. Being nice isn’t — or shouldn’t be — news.

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Thinkstock photo by RawPixel.

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The Invisible Dance of Chronic Fatigue and Cerebral Palsy

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Growing up with spastic cerebral palsy, I was unaware that I used more energy than others to do the simplest tasks. I didn’t know any different. To me, it was perfectly normal.

As with any child, I had an abundance of energy, and I took all of the challenges cerebral palsy brings, head on, and I fought with everything I had. Why? I was determined to gain as much physical ability as I could before I reached adulthood, and I succeeded. I remember the satisfaction I felt when I attained the milestones: walking independently, running, riding a two-wheeled bicycle (without training wheels), etc.

I graduated high School with honors and was accepted into nursing school. I was walking without any aids and, though my balance was tenuous, I felt relatively stable on my feet. That was 31 years ago. I failed to get my RN as chronic pain set in to both knees and I was forced to quit. Soon after the chronic pain began, so did the chronic fatigue. I felt like I was an unwilling participant in a new dance that never seems to end.

Since that time the effects of aging with cerebral palsy have taken their toll. I walk with a four-wheeled walker at all times, have zero free-standing balance left and use both manual and power wheelchairs to complete certain tasks and conserve energy. Yes, you heard me correctly. I have to conserve energy… I no longer have the abundance I had when I was younger. The pain and fatigue use up my energy reserves faster than anything else. The dance continues.

The level of pain and fatigue have continued to ramp up, meaning that I take an inordinate amount of time to do anything. This results in a fatigue so profound that I fall asleep in a nanosecond and it doesn’t matter where I am sitting: at the computer, in front of the TV, in my wheelchair reading a book or riding in the front seat of our car.

I manage to sleep, though some nights are restless and shallow. It doesn’t matter if I sleep well or not; the fatigue is with me the moment I open my eyes. Most mornings, it feels like I haven’t slept at all. The dance goes on throughout the night.

Conserving energy is complicated, so I envision that I have seven tablespoons of energy per day.  Once I run out of spoons, I run out of energy. I look at the tasks for each day and determine which ones I can accomplish without completely using up all my spoons. Some days I succeed and other days I fail miserably.

For example, if I want a shower, that will cost me two spoons worth of energy. Cleaning the kitchen and loading and running the dishwasher take two-and-a-half spoons of energy. Laundry takes from two to four of spoons of energy depending on the size of the load(s), how many loads there are to do and the number of garments that must be loaded and unloaded and/or hung up to dry, then folded.I am also an entrepreneur with my own business, so I also have much work that must be done on the computer, phone and iPad. I love the work, but it is very tiring.

The last few months, I have really been working on “proper spoon management.”  This means that I have been taking time to rest in the day (20 minutes max), I am aware of how many spoons I have left at all times and I hold onto that last spoon very tightly. This has been slightly beneficial, but I am still aware there is an invisible dance going on and I cannot bow out.

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3 Things I Can Do to Help My Sister Who Has Kids With Disabilities

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My sister is raising two sons with disabilities. We don’t often get the time to hang out with one another without a list of things to do and places to go. We live hundreds of miles from one another. So our time together is precious.

She recently came to visit without her children. She needed a break. She was exhausted, physically, emotionally, psychologically and spiritually. Her life, as a mother, is centered around her sons’ needs.

The challenges of a blended family of 6 and maintaining a household is overwhelming. I imagine adding the necessities of children with disabilities could feel overpowering.

Life, to some degree, is different for her. Thankfully, she shares with me the anguish of being her sons’ advocate, wondering if she is doing the right thing and expressing she never feels she’s doing enough.

I struggle with knowing how to help, and I feel inadequate.

I don’t know much about disability so I I am hesitant in offering opinions and feel powerless when I don’t have answers.

After spending a weekend together, I realized I do a few things that are helpful. Maybe these ideas will help you support someone you know who has kids with disabilities, too.

1. Be a good listener.

We all want to be heard and understood. A few easy ways to actively listen are:

  • Listen to their heart. What are they feeling and where do they struggle?
  • Affirm their feelings. An example could sound like this, “That would be confusing/hurtful/overwhelming for me, too” or ” I would also feel sad/angry/tired if I were in your shoes.”
  • Ask, “Is there any way I can help?” or  “What can I do for you?”

Support by listening with your heart, validate their feelings and offer to help. Knowing they are not alone could be encouraging and uplifting.

Listen beyond the words. Listen for the deeper need. Let them talk about what’s happening as it may be what they need in order to move in the right direction. 

 

2. Offer rest. 

I imagine having a break is vital for a parent of children with disabilities. Most of us live on autopilot and don’t take the time to rest. Yet, it’s essential for our mental, physical and spiritual health.

My sister expressed she didn’t know how tired she was until she took a break from caregiving. She took naps, slept in and went to bed early. She allowed herself to slow down and rejuvenate. She came to my home for a time-out.

There are many other ways to give or encourage a respite:

  • Ask if you can run some errands or do chores.
  • Ask how you could help them find rest.
  • Investigate local respite care services and offer to do the research for them.

Rest is essential in life. A little food is helpful, too. Rest is like the food and water we all need. Rest is what sustains us on our journey.

3.  Affirmation and support. 

I’ve noticed many parents of kids with disabilities usually feel they are never doing enough. Words that affirm, strengthen and highlight what’s working are supportive and encouraging. Affirmations can be reinforcing.

You can be a cheerleader in their life. Here are a couple of ways to cheer them on:

  • Point out what they do well.
  • Ask them, “What do you think is working right now?”
  • Send them an encouraging text, scripture, quote or handwritten note.

Affirmations are markers that can encourage someone to keep going. They are supportive and reassuring.

My level of inadequacy and feelings of powerlessness diminish as I realize I can “do” much more that I thought I could.

I hope the lessons I learned from a weekend with my sister are helpful to you. We can listen well, promote rest, offer to help and encourage with our words.

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Thinkstock image by Jupiterimages

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