As Hollywood came together to celebrate people with disabilities, media creators recognized the importance of accurate representation of the largest minority in the U.S.
Scott Silveri’s new hit show on ABC, “Speechless,” which features a young man with cerebral palsy (Micah Fowler), won three awards including two for Silveri (Writers Guild of America West Evan Somers Memorial Award and SAG-AFTRA Disability Awareness Award along with director/producer Jake Kasdan and producer Melvin Mar.)
The honors were presented at the Media Access Awards, an event promoting disability and its depictions in film, television, and new media. In attendance were key entertainment leaders with ties to disabilities. It was emceed by actor/comedian Danny Woodburn who also was awarded the Norman Lear – Geri Jewell Lifetime Achievement Award for both his acting career and his disability advocacy work.
Casting Director Susie Farris, who cast Fowler, was awarded with the Casting Society of America Award. She spoke about the importance of Fowler’s character not being an inspiration. “Speechless” now reaches seven million people.
Silveri, who grew up in a family with a brother who has cerebral palsy, talked about not even thinking about including people with disabilities in his work for many years. When he came up with the idea of “Speechless,” he said he found networks willing and interested. Silveri thanked disability advocates who have been working for years to open the doors for him. “If we’re going to be storytellers,” Silveri said, “then we have to include disability.”
Speaking of “white able-bodied male jerks” who write for Hollywood, Silveri said many don’t get the importance of inclusion of people with disabilities, but they are not trying to be wrong.
Another major winner was creator and executive producer of A&E Networks’ “Born This Way” Jonathan Murray, who said people with disabilities “have been placed on the sidelines and the margins of primetime television. With ‘Born This Way’ airing on A&E, that is no longer the case.” His newest show, Emmy-winning “Born This Way,” features seven individuals with Down syndrome. During its first season, the show increased its viewership by more than 80 percent, which Murray says proves that making shows featuring people with disabilities “is not only the right thing to do, it’s also good business.”
Awarded with the Producers Guild of America George Sunga Award, Murray has been promoting the
importance of including all minorities in his various television series such as “The Real World,” “The Challenge” and “Project Runway.”
The Media Access Awards aim to recognize depictions of disability that are accurate, inclusive and multi-faceted. The ceremony honors industry professionals who have advanced disability-related narrative in fields including writing, producing, casting, performance and directing.
By promoting success stories of people with disabilities, both “Speechless” and “Born This Way” help to change negative perceptions of people with disabilities, especially among employers.
“Each year 300,000 young people with disabilities reach the age to enter the workforce,” Murray said. “However, despite polls showing that most of these young people want to work, they often hit a roadblock because of negative stigmas. So it is wonderful that views of “Born This Way” see young adults in our series contributing to their workplaces, and, in one case, starting her own business. It is also wonderful that our viewers see our cast as individuals, each with distinct personalities and dreams.”
Deborah Calla and Allen Rucker chaired the awards ceremony. Co-chairs included Ray Bradford, Pam Dixon, Jenni Gold, Sam Maddox, Paul Miller, Adam Moore, Kim Myers and George Sunga. Other winners included actress Jamie Brewer (SAG-AFTRA Harold Russell Award), who has Down syndrome, and MacGregor Arney (Christopher & Dana Reeve Foundation Scholarship,) an upcoming young actor with cerebral palsy.
Zach Weinstein, who presented Arney with his award, summed up one purpose of the awards ceremony. Talking about his 13-day-old son, he said he is happy to known he will grow up
in a world “where disability is going to be normalized.”
I hope this letter finds you doing well. You might remember me from the letter I wrote to you asking for an apology for mocking New York Times reporter Serge Kovaleski’s disability. I don’t know if you read it or not, but it’d still be nice to get an apology.
First, I want to say congratulations on the win, and I truly hope your presidency is a successful one. However, now that you are in line to become the 45th President of the United States, I want to remind you of a few things.
Nearly 53 million Americans live with a disability, and I am one of them. I was born with cerebral palsy, a disability which makes my hamstrings tight and causes me to walk with a slight limp. Growing up with CP was challenging, as I was always the last kid to get picked for sports teams and found that making friends was even more of a challenge.
You will now be our President, and we are counting on you to enact policies that benefit those with disabilities. When people with disabilities and other challenges succeed, every American succeeds. In order to truly Make America Great Again, you must not forget about people who live with a disability. We deserve to be treated with the same amount of dignity and respect as everyone else, and will not tolerate being mocked and made fun of.
I want to end this letter by again encouraging you to spend a day with someone who lives with a disability. You might just learn a thing or two about grit, determination, and courage. I’ll even let you spend the day with me, if you want. I’d be happy to show you what it’s like living with cerebral palsy.
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My name is Maria Zuccarello. I am a fully credentialed Special Education teacher for the Los Angeles Unified School District. I also have a Master’s degree in Special Education. I am writing to urge you to take a vital and necessary role in maintaining and further developing healthcare reform efforts that will ultimately lead to universal healthcare coverage for every American citizen.
I have Goldenhar syndrome and hydrocephalus. I have had over 20 surgeries to correct my facial deformities, eye problems, and hydrocephalus. I wore a back brace for nine years for scoliosis. In addition, I must wear a hearing aid. Originally, some of my needs were covered by private medical
insurance from my father’s group insurance plan provided by his original employer. It never covered all of my medical needs, resulting in thousands of dollars in out-of-pocket expenses. For example, my hearing aid was never completely covered. A hearing aid is a necessity for me to participate as a productive member of society. In fact, my most recent hearing aid was not covered by my current
medical insurance provided by my employer.
My late father, an immigrant from Italy (and naturalized American citizen) always wanted to start his own business and live the “American Dream.” One of the consequences of living his “American Dream” was the great difficulty of finding both affordable and comprehensive coverage that would cover all my medical needs when I was still a child. Health insurance companies were wary of insuring me. Because of my many past surgical and medical procedures and preexisting conditions, they saw me as an enormous financial risk.
After a significant period of searching, my father found the Major Risk Medical Insurance Program (MRMIP) to cover most, not all, of my needs. This government program is for persons such as myself who are a “major medical risk.” However, the premiums are astonishingly high and frankly prohibitive for most of the Americans it is supposed to benefit. I was on this program – the only
one to take me – for several years. It saw me through every doctor visit and surgery. Yet MRMIP did not cover the cost of my hearing aid.
MRMIP was not a perfect solution to my health insurance concerns, but it allowed my parents and I to worry less about paying for medical care or gaining permission for my specialist visits. Therefore, I was able to concentrate on earning my BA from Pitzer College and my Master’s from Cal State Northridge, leading to my current career as an Educator.
No health insurance or inadequate insurance can equal more illness, more incapacity and more dependence on government living assistance (welfare, SSI and the like.) Special Education is supposed to help people with disabilities become productive and functioning members of society. However, without proper healthcare it is difficult for us to achieve this goal. Improper or inadequate healthcare contributes to absenteeism in both school and the workplace, and an inability to work or learn at full capacity.
This brings me to the purpose of my letter and my plea to you. The Affordable Care Act was a momentous step in the quest for universal health care. I am asking you to continue to work
towards the end of private insurance monopolies and the implementation of more affordable or free insurance that addresses the real health needs of the entire U.S. population in a comprehensive and timely manner.
Appropriate and accessible healthcare is paramount to a fully functioning society. With stable healthcare, people can more single-mindedly apply themselves to study, work and the pursuit of opportunities that cater to their personal interests. The vast amount of opportunities offered in this country has always been the backbone of the American Dream. Prohibitive healthcare costs and inadequate coverage impede access to the American Dream.
People with disabilities are largely unemployed or underemployed. Some who are unemployed but have marketable skills become entrepreneurs and open their own business. This is a barrier to healthcare, as people with disabilities often rely on group insurance for affordable medical coverage. However, it is difficult for anyone with or without a disability to get or retain a job – particularly one offering health coverage. So, a person with a disability would be well advised to maintain individual insurance, but it is difficult to get adequate coverage for a reasonable price.
The insurance companies have been unduly prejudiced against people with disabilities for too long. In order to gain the full benefit of the Americans With Disabilities Act and the Affordable Care Act, I urge you to head a healthcare reform which guarantees no-cost, full-coverage care that is equally accessible to all people regardless of their disability.
Thank you for taking the time to read my concerns. I hope the information I have given you puts the situation in a new perspective. I hope to see you as a strong voice in insurance and healthcare reform.
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Whether you have a disability or not, traveling for the holidays means extra stress. November and December are the busiest travel months of the year, and like everyone else, people with disabilities are more likely to take trips during this time. But for those who don’t travel often, preparing for a trip, packing, and planning for accessibility can feel overwhelming on top of the hustle and bustle of the holidays.
I love to travel and don’t let having cerebral palsy and using a power wheelchair stop me. I spent 20 years living thousands of miles from my closest family, so traveling for Christmas was an almost yearly event. I learned a lot during that time, so in the spirit of giving, here are 12 tips for holiday travel when you have a disability and use a wheelchair or other mobility device.
1. Plan ahead.
When people with disabilities travel, we have to think about things others don’t. For holiday travel, there are additional considerations. Everything may and likely will take longer because of the sheer number of people traveling. Weather can also be a factor. Flights may be delayed, and roads may be slippery due to ice and snow. Allow extra time for everything compared to what you normally need to accomplish the same task or reach the same destination.
Throwing a bunch of stuff in a suitcase the night before you leave is never a good idea for any traveler, but as disabled travelers, we risk forgetting things we need for safety and mobility. Pack essential safety items such as medications first, and put them in a secure place where you’ll always have access to them, such as in a bag on your wheelchair. If you’re flying, they should be in your carry-on bag in case your luggage gets lost. Keep a change of clothing in your backpack or in a carry-on bag in case you get stuck at the airport, at a truck stop during a snowstorm, etc.
Whenever possible, have travel versions of items you absolutely don’t want to forget. For example, I have a small wheelchair travel battery charger that is about the size of a laptop power converter. It stays in my suitcase all the time, so it’s always ready for my next trip.
3. Pack light, but not too light.
You can save space and time by planning outfits in advance. Instead of packing a stack of shirts and a stack of pants or skirts, pair them with each other when you put them in your suitcase. It’s faster and easier to get going quickly in the mornings during your trip, as your clothing is already ready to go. If you know your itinerary, you can even decide what you are wearing on each day; for example, a nicer outfit for Thanksgiving dinner, or your favorite ugly sweater for a Christmas party. Packing folders and cubes are a great way to keep your clothing organized. They naturally compress your clothing so it takes up less space.
If you’re traveling for a week or less, you really don’t want to have to deal with laundry. Bring extra clothes, especially extra pants, in case of bathroom issues, spilled food, etc.
4. If you’re flying, protect your wheelchair.
A terrible phobia and the lack of accessible bathrooms on airplanes have kept me happily on the ground and road tripping since 2000. However, when I used to fly, one of my biggest concerns was the airlines damaging my wheelchair. If you’re flying, it’s important to take steps to protect your wheelchair from breakage.
If you have a manual wheelchair, fold it and secure moving parts with straps or bungees. If you have a power wheelchair, remove easily damaged parts, such as the joystick. If they can’t be removed, wrap them in padding, towels, etc. to reduce the risk of breakage. Remove your back and/or seat cushion to use during the flight to protect you from skin breakdown.
Airlines can’t charge extra bag fees for transporting mobility equipment. If you need to bring a walker, shower chair, etc. with you, don’t hesitate. You want your trip to be as safe and comfortable as possible, and that means having the right equipment. There are awesome portable versions of many of these items, so even if you’re driving, they won’t take up as much space as you might think.
6. Stay where you feel comfortable and safe.
Holiday guests typically stay with family, but that isn’t always possible for those of us with physical disabilities. When deciding whether to stay with relatives, consider the accessibility of their home. Are there steps, and if so, how many? Is there a bathroom on an accessible floor that will meet your mobility needs? Is there a bedroom on the ground floor where you can sleep and have space for any medical equipment you may need?
Families often want to be supportive and accommodating, but sometimes the physical realities of their home make staying with them difficult or impossible. Well-meaning relatives may not understand the extent of your needs and think that just because their home doesn’t have steps, you can stay there. They may not realize that carrying your wheelchair up stairs isn’t an option. Don’t be afraid to politely turn down an offer of accommodation if the situation won’t work for you. Once you arrive, it may be possible to change things at the house to make the situation work in the future, or at least help your loved ones understand why you need to stay in a hotel.
7. Buy a portable ramp.
A portable ramp is a great investment that can help in many situations, such as visiting friends or moving to a new home and needing quick and easy access. Even if a relative’s home is not accessible enough for you to stay there, you may need to get in for family meals and festivities. In these situations, having a portable ramp can make the difference between smooth, easy access and a difficult, possibly hazardous situation.
Portable ramps are relatively inexpensive and can be transported easily in most vehicles. They are great for providing access to buildings with one to three steps, though I have done up to five. Obviously the more steps, the longer the ramp you need, but it isn’t necessary to meet ADA standards for a temporary situation. Even a fairly steep grade can be negotiated with assistance from family members pushing and/or guiding your wheelchair up and down the ramp. If you visit a particular relative on a regular basis, and they have storage space, it’s not unreasonable to ask them to keep the ramp at their home for future visits.
8. Make hotel reservations early.
Lots of people travel during the holidays, and hotels fill up. Be sure to make a reservation as soon as possible to ensure you get the accessible room you need. I always make my reservations by calling the hotel and asking them specifically to reserve the roll-in shower type of accessible room. That’s the only way to somewhat guarantee you will get the right room, but mistakes can still happen. Do your research online and check reviews; some websites even show pictures of the rooms, which may give you an idea of accessibility.
9. If you have a service dog, don’t forget his or her needs during the holidays.
Although service dogs are typically calm and well-trained, your dog may encounter things they are not familiar with, such as flashing Christmas lights, animatronic figures in store displays, or people playing musical instruments. Use patience and kindness to help your dog get used to these new experiences.
When visiting relatives’ homes, it’s a good idea to keep your dog on a leash. Even if he or she is great at your home, they might have hazards such as a poisonous poinsettia or breakable items on low shelves. Even the most well-behaved dog can be tempted by food on coffee tables or counters if not supervised. Your dog could slip out the door if there are lots of family members, especially kids, going in and out and not paying attention.
Oh, and Aria says don’t forget to buy your pup a present!
10. Challenge stereotypes in a positive way, and know when to “let it go.”
I’m a disability activist. I am strong in my advocacy, and in my everyday life I do my best to correct misinformation and point out ableism and stereotyping wherever I see it. However, at holiday gatherings, I believe it’s best to choose your battles wisely. Sometimes it’s easiest just to keep the peace. If Grandma wants to pray for you or says “crippled,” nodding and changing the subject may be the best choice. Sometimes it’s not worth hurting well-meaning older people over less than politically correct language.
However, it’s OK to draw the line somewhere, and you can decide where that is best for your family. If someone is making truly hateful remarks, you don’t have to sit there and take it. Everyone should be able to enjoy the holiday, and family members should all be aware of their behavior and show kindness and respect for each other.
I choose to challenge ignorance and correct stereotypes primarily by example. If you talk about your life openly, your work, hobbies, and interests, you can show your loved ones that you live a worthwhile life. Tell people about whatever you do that’s awesome and makes you happy. I often use travel to naturally change people’s perspective. It’s hard to feel sorry for someone, or doubt their abilities, when they road trip all over the country having adventures and writing about it.
11. Friends are the family you get to choose.
Travel and seeing family members can bring up old memories and conflicts. Remember you’re not alone in this; nobody’s family is perfect. Chances are, your friends with and without disabilities are dealing with similar struggles. Don’t be afraid to talk to them about what you’re feeling; they will probably have stories of their own to share. If you can, make time to share the holidays with friends too. Friends are our chosen family and understand us in a way our blood relatives sometimes can’t, no matter how much we love them.
12. Keep your sense of humor.
Traveling with a disability can be lots of fun, but things never go perfectly. Scratch that. All travel is lots of fun, but things never go perfectly. If anyone tells you they had the perfect vacation, they’re probably lying. You just remember the good parts when it’s all over. When things are not so good, the best defense is to laugh. Don’t take it too seriously, don’t scramble. Breathe, relax, and take the time you need to solve whatever challenges come your way. Don’t try to hide or cover up your feelings and difficulties from your loved ones. I struggle with this one a lot, because I always want to be seen as capable. But we all fall down sometimes, and honesty is the best policy.
I hope this guide will help you survive the holidays with your mobility equipment and sense of humor intact. Happy travels!
Yesterday, I went to collect a desk for my craft room. A little girl of about 7 was looking at me with my hand splints and walking stick. As she was looking, I smiled at her and she smiled back. I wasn’t bothered by this; it happens all the time. I’m in my late 20’s, but look younger. I’m definitely not an old lady, but I certainly walk like one.
Everything was fine, until her mother pulled the little girl away and told her off for staring. Now, I accept that it is rude to stare at other people and we should teach children not to do it. But when it comes to small children and people with disabilities, maybe we should do things a little differently.
I am someone she might never have encountered before; she might not know anyone who uses a walking stick or a wheelchair or wears splints. To this little girl, I could have been as different from her as another species of animal altogether, like at a zoo where we take children to stare at what they don’t usually see.
We generally encourage children to be inquisitive, to notice and absorb things around them. We encourage them to question and learn about the world. But when it comes to people who are different, we tell them not to look, not to ask and to stay away. Perhaps we are sending mixed messages! Maybe we are teaching them that people with disabilities are strange and to be avoided, possibly even scary or dangerous.
If something remains mysterious to children, they may find it hard to be understanding and compassionate. They might grow to become fearful of difference. If they’re not given the opportunity to ask questions, kids can’t learn that people with disabilities are just the same as them. They may remain too uncomfortable to be able to have an open discussion about a person’s limitations and what help they need, or if they even need any help at all. We might never move forward with accessibility, as the next generation find themselves unsure how to interact with people with disabilities.
Most importantly, children who have not had the opportunity to discuss, understand and accept those around them with disabilities may grow up to become one of the many adults who stare at me as if they have never seen anything so absurd as a young person with mobility difficulties. They may become the adults who speak over me when I am in my chair, not acknowledging me. They may become the adults who ask inappropriate questions or use offensive language.
At age 12, before I was aware of my condition, my mum took me to volunteer at a sport session for people with disabilities. It was a valuable learning experience for me. I learned a lot about the vast spectrum of health needs. It normalized disability for me. I realized disability is just another strand of diversity in the human race, just like some people are female and some are male, some are heterosexual and some are gay. It’s part of what weaves the fabric of humanity.
Now that I’m on the other side, I would much rather hear a child ask their carer about me and hear them respond with an explanation, “Some people have health problems and need a stick to help them walk.” I’d rather have that kid in the restaurant come over and ask me about my condition, or just have a little chat. Then next time they meet a person with a disability, it won’t be alien — it will be another kind of normal.
The little lady in the picture is my niece. She is 4, and she knows Auntie Annie needs a stick or chair to get about. She knows I can’t dance, but I can draw and sing and read. She understands my limitations, but she doesn’t worry about them. She just accepts me for who I am. Children’s world views are easily shaped. So please, shape them to be understanding, compassionate and tolerant.
We need to familiarize children with disability to make it normal. That way, the next generation can grow to to become more accepting than the last.
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I hate this sign. Every time I see it, I hate it more. And it’s not for the reasons you might think.
I don’t hate women, or wheelchair users. I’m not a transgender woman and made to feel I don’t belong there.
It’s because my 7-year-old son has dystonic cerebral palsy, and uses a wheelchair. He lacks the upper-body strength and torso control to use the toilet independently, or even with my support, despite the occasional availability of handrails. It’s because he needs to be changed, and there is no place to put him other than the floor. It’s because I have to lay my son down on disgusting bathroom floors, which are covered by an average of 77,000 bacteria. It’s because he is getting bigger and heavier every year, and it’s getting harder on me to lower him safely to the floor and bend down and lift him again. It’s because as he ages and grows wiser, it is getting increasingly uncomfortable for him and I to go together to a room set up for girls and women.
I thought that just sharing our struggle would be enough to inspire people to support Changing Places. I thought when I told people about exposing him to these germs and situations, people would understand. I thought sharing about how we have changed him in the back of our car, exposed to the elements and trying to keep his privacy, that people would “get it” and help make improvements for people with similar problems. I thought people just needed to become aware, and they would do the “right thing” to make his world accessible on their own.
As it turns out, it seems people with disabilities just don’t rate high enough on the social totem pole here in the USA. My son does not have a convenient, private place to be changed anywhere other than at home. In fact, when he lays on the floor on our mat in the public restroom, on the dirty, germy, floor that thousands trample on, one can see him under the stall doors.
It was suggested to me by an airport representative that we could use the nursing room at a major local airport, as there is a bench there. As I was once a nursing mom, I can tell you how “well” this would be received. These rooms were designed to give babies a comfortable and sanitary place to eat away from the smells and germs of the restroom. I am not willing to subject my son to the scowls of disapproving mothers on top of the embarrassment he already endures.
It’s not just us.
There are roughly 4 in 100 people that need these changes. This challenge is often not spoken about. For those with hidden disabilities, such as urinary incontinence or developmental challenges that limit full toilet training, it’s often quite painful to raise this issue. Other folks simply stay home, or cut outings short because it’s too difficult. The need is bigger than you can see, and goes far beyond my son’s needs.
The ADA has been in place for over 25 years in an effort to provide inclusion for everyone. But the minimum standards for architectural design just aren’t sufficient for millions of Americans. We need adult-sized changing-tables, unisex restrooms to allow for opposite gender caregivers, sufficient space, and lifts for transfering.
There are people who have said that even a changing table is extravagant or gluttonous. That we should “suck it up.” That we should simply adapt to the world and not expect the world to cater to us. That we shouldn’t expect large businesses or locales to finance changes for just a few. But we are not just a few. We are 4% of the population in the U.S. alone.
No one complained about extravagance when restrooms started installing automatic toilets, hand dryers, seat covers, and hooks for a purse. These modern conveniences are missed when they aren’t there. And I ask these people who say we are requesting too much… What if you became disabled tomorrow? Or your loved one? The disabled population is the biggest minority that anyone could become a part of, at any time. Would you be just fine laying on a dirty bathroom floor?
It’s not a matter of money. It’s a matter of whether you think millions of us are worth it. That we deserve the basic right of human dignity.
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