Brave Enough?

You know what I really want to see on TV - a show that has a character with severe disabilities. I don't mean a show ABOUT a person with severe disabilities, but rather a show the INCLUDES a character like that.

We've seen shows that include people with Down Syndrome, people with other intellectual disabilities, and people with physical disabilities like the current Push Girls show. But I want to see a person who uses a wheelchair, uses a device for communication, is tube-fed, and maybe even someone who has a trach.

I don't want that character to be the only thing the show is about. I want that character to be part of a family, or a group of friends - someone who is part of life, both its challenges and its fun.

Perhaps a show like Modern Family. Yes, it's a comedy and some of you may be thinking that there is nothing funny about a person with severe disabilities. I disagree. I have met some hilariously funny people, people who just happen to have several significant disabilities.

I know that Ashley is not considered severely disabled by some, although her diagnosis of deafblindness does sort of qualify her to use that label. She has a wicked sense of humor and always has. I've also met a woman who moves her power wheelchair by blowing into a straw. She loves to tease and play jokes on people and has the most infectious laugh ever.

It's time for society to want to be friends with people with significant disabilities. Most of the time, I think people just don't know how to be that friend, and a TV show could help.

What do you think? Is there a network brave enough to even consider such a show?

Miss Deaf America Snubbed

I searched and searched the wide web for a video of Miss Deaf America signing America The Beautiful at last Sunday's Super Bowl. I know she was there - well, I assume she really was there - but I don't know for sure because she was never on camera - or even anywhere near Kelly Clarkson while she sang the same song.

Rachel Mazique, the 2011 Miss Deaf America, had this to say about the snub:

“I truly hope that this becomes a teachable moment for everyone involved, and that American Sign Language renditions of these iconic songs are broadcast in future Super Bowls rather than being a token gesture.”

A group of her supporters are asking that NBC grant her an interview on the Today Show, and have started a petition in support of that request. There are already over 5000 signatures. If you would like to add your name, here is the link.

And apparently this same thing happened last year. Let's make sure that next year is different...

A Tribute to Fred Fay

“Disability is equal opportunity," Fred Fay told the Globe in 1998. “Anyone can qualify at any moment."

His moment arrived in his junior year of high school, when his hands slipped as he performed a move he often executed on a trapeze in the backyard of his family’s Maryland home.

Left a quadriplegic by the 10-foot fall, the young man had to decide what he would attempt to do with the rest of his life. Choosing activism, he became an early advocate for disability rights, playing a role in everything from ensuring the Metro subway in Washington, D.C., was built to accommodate wheelchairs to lobbying lawmakers to adopt the Americans with Disabilities Act.

Dr. Fey passed away on August 20th of this year at the age of 67, but his legacy will live on. A Life Worth Living, a film about Fred's life and his role in the Disability Rights Movement, is scheduled to air on PBS on October 27.

Check out this trailer for the show, and then be sure to check your local listing for the air time on October 27th.

Doing It Right

Want an example of inclusion at its best? Watch the Amazing Race on Sunday nights.



This season’s race brings back racers from previous seasons – teams who did not win, but came very close to winning. And, two of my favorite teams are back!

Luke is Deaf and is racing with his mother, Margie. Zev is racing with his brother, Justin. Zev is diagnosed with Asperger’s Syndrome.

The really glorious thing? Not one iota of special attention is given to either team. They race, they stumble, they argue, they laugh, they look silly – just like every other team in the race. The show doesn’t spotlight them, advertising their ‘token’ disabled person. The host makes no big deal about it, but does impress me greatly just because he learned some sign language to be able to communicate with Luke. And that’s all the host does – communicate. He doesn’t draw attention to his signing – he doesn’t make a spectacle of Luke. He doesn’t comment about Zev’s Autism. They are two teams racing, just like all the other teams.

Luke and Zev are both funny young guys. Luke finally gets a chance to drive, and is all smiles as he gives a big thumbs up to the camera. He talks about one of the other teams – two beautiful young women – and calls then his race girlfriends.

When one of the challenges faced by all teams is to draw on their inner artist, Justin says Zev will be great at that because he is artistic. Zev says, “Autistic too!” The two young men cut up constantly and you can see in Justin’s eyes how much he admires and loves his brother.

I am thrilled to see people with disabilities on a mainstream television show where their disability is not the focus of the show. This, in my opinion, is inclusion at its best.

Deaf Like Me

I know it may not seem like such a big deal to most people, but when Ronnie sees a Deaf person signing on TV, he gets so excited. We saw this commercial for the first time this past weekend. Another interesting aspect of this was that the commercial aired during Amazing Race where one of the contestants is a young man who is Deaf.

Keep 'Em Dreaming

So what was your favorite Super Bowl Commercial. Here's mine:

Don't Believe Them, Artie

I didn't start out as a Gleek, but I am now. I'm two seasons behind on the wildly popular show, Glee, but I am making my way throught Season 1 on Blueray right now. I am loving the show, and try to fit in a new episode whenever I can.

Today I watched two episodes. The first included a story about Rachel (the glee club's biggest star) getting very upset because she had tonsilitis. Even though her doctor recommended she have her tonsils removed, she just couldn't because she believed she would lose her singing voice. And in Rachel's mind, the only thing she has going for her is her voice. Without it, she feels she would be nothing.

But another glee club star, Finn, took Rachel to see a friend of his. Finn and his friend used to play football together. The friend, however, was injured and was paralyzed from the chest down. The friend convinced Rachel that she was more than just her voice, and that life, though different, wasn't so bad. Rachel bought it, and the episode ended happily ever after.

The next episode, however, seemed to send the exact opposite message. Artie, the glee club member in a wheelchair, succumbed to the flirting of one of the girls in the club, and decided he wanted to dance. Not just a different kind of dancing that involved his wheelchair, but real stand-on-your-feet dancing. The girl researched a lot of medical trials and convinced Artie that it would be possible for him to walk and eventually dance.

Then, unlike with the ex-football player from the previous episode, everyone, including teachers and guidance counselors, convinced Artie that he had to accept his limitations and stop dreaming of walking. The episode ended with Artie telling the girl that he wasn't going to walk, or dance, or even be able to sink a basketball. The girl danced with an able-bodied boy as Artie gazed sadly off to the side of the stage.

So why would the writers promote dreams and a no-limits lifestyle for one character, and then in the next episode have Artie accept that he was different and shouldn't dream? Maybe the answer will be revealed in later episodes, but for the first time, I really didn't like Glee.

A Modicum of Sense

Well, at least the Academy of Arts and Sciences haven't completely lost their minds. I was appalled when I first heard that the TV show, Family Guy, got an Emmy nod for their song, 'Down Syndrome Girl.'

Haven't heard it? Well, here is a sampling of the lyrics:


And though her pretty face may seem a special person's wettest dream. [...]

You must impress that ultra-boomin', all consumin', poorly-groomin', Down Syndrome girl. [...]

You want to take that little whore and spin her on the dancing floor. [...]

My boy between the two of us we'll get her on the shorty bus and then you're gonna take it on a whirl.

Now go impress that super-thrilling, wish-fulfilling, YooHoo-spilling, ultra-swinging, boner-bringing, gayly-singing, dingalinging, stupefying, fortifying, as of Monday shoe lace-tying, stimulating, titillating, kitty-cat impersonating, mega-rocking, pillow talking, just a little crooked walking, poorly-pouting, poopie-sprouting, for some reason always shouting, fascinating, captivating, happiness and joy-creating, Down Syndrome girl.

According to Newsbusters.com, "The Feb. 14 Family Guy episode, which the song appeared in, sparked outrage after its premiere - most notably from former Alaska Gov. Sarah Palin who has a son with Down syndrome.

At one point in the episode, the character with Down syndrome said that her mom was "the former governor of Alaska," a clear reference to Palin and her son, Trig.

Palin quickly criticized the show for the distasteful jab at her son. "[W]hy make it tougher on the special needs community? When is enough enough? When are we going to be willing to say some things just aren't really funny?" she said on Feb. 16."

Mrs. Palin and I almost never agree on anything, but on this item we most certainly do. The song was not funny - it was offensive. And even though, as New York magazine noted, the Outstanding Original Music and Lyrics award, the category in which this song was nominated, has been "gaining a reputation as Emmy's quiet nod to First Amendment rights", this time things went too far.

Thank goodness the song did not win the Emmy.

"My Deaf Family"

I'm a fan of all the TLC family shows like Little People Big World, 19 Kids and Counting, and Table for Twelve. I just watched a video done by Marlee Matlin for a show similar to those. So far she hasn't found a network willing to pick up the show, but watch this 10 minute video from YouTube and tell me if you would like to see this pilot become a regular show:

Kick In The Gut or Just Another Character

You've all probably heard and read about the controversy over last week's Family Guy episode. But if you haven't, I wanted to share these selected writings from Patricia E. Bauer's blog. She has done an excellent job gathering opinions from both sides of the controversy. Take a few minutes to read through them, and then let me know your thoughts.

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Palin describes the show as a ‘kick in the gut’

From the New York Daily News:

Following a Valentine’s Day broadcast of Fox’s Family Guy that got laughs at the expense of a character with Down syndrome, former Alaska governor and Fox commentator Sarah Palin published a Facebook post saying the show had “mocked” her son Trig, who has Down syndrome.

Palin said the show, in which the character was labeled a “little whore” and a “poorly groomin’ Down syndrome girl,” felt like a”kick in the gut.” Her Facebook comment included a paragraph attributed to her daughter Bristol that begged for compassion toward people with disabilities and ended by calling the show’s writers “heartless jerks.” The text follows:

“When you’re the son or daughter of a public figure, you have to develop thick skin. My siblings and I all have that, but insults directed at our youngest brother hurt too much for us to remain silent. People with special needs face challenges that many of us will never confront, and yet they are some of the kindest and most loving people you’ll ever meet. Their lives are difficult enough as it is, so why would anyone want to make their lives more difficult by mocking them? As a culture, shouldn’t we be more compassionate to innocent people – especially those who are less fortunate? Shouldn’t we be willing to say that some things just are not funny? Are there any limits to what some people will do or say in regards to my little brother or others in the special needs community? If the writers of a particularly pathetic cartoon show thought they were being clever in mocking my brother and my family yesterday, they failed. All they proved is that they’re heartless jerks. — Bristol Palin”

(Ellen, the character with Down syndrome, was voiced by Andrea Fay Friedman, an actress who has Down syndrome.)

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Ellen Seidman, writing at Huffingtonpost.com, says Sarah Palin’s criticism a recent episode of ‘Family Guy’ is “completely misguided.” Seidman, whose son has cerebral palsy, says she applauds what she views as the show’s message — that people with disabilities are people just like everyone else. An excerpt:

I work so hard to spread that message every single day of my son’s life. It is an endless, Sisyphean labor of love. To be sure, I would not enjoy it if someone called Max an asshole, but hey, at least they’d be engaging with him instead of just gaping. At least they’d be treating him like a typical person instead of like a freak show.

Sarah, the genius of this episode is that it made a girl with Down syndrome seem like just another feisty teenager with ‘tude. It also gave people in this country a way to get the conversation going about people with disabilities.

… Really, you should be grateful to “The Family Guy” — for tackling a taboo topic with relatable humor and smarts; for holding a funhouse mirror up to the public so they can recognize their shortcomings in their dealings with people who are handicapped; and for being real.

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Assessing Sarah Palin’s criticism of ‘Family Guy,’ Jennifer Armstrong on Entertainment Weekly’s Popwatch blog says the show actually treated Ellen, the character with Down syndrome, “very much like any other character, which shows quite a bit of respect in the Family Guy universe.” An excerpt of her comments (accompanied by a video of the show’s “Down Syndrome Girl” number):

Her defining trait wasn’t her Down syndrome, it was the fact that she was bitchy and demanding and ultimately rejected Chris even though he heeded her every command. You could see it as mocking, I suppose, that Stewie sang a song called “Down Syndrome Girl” while getting Chris ready for his date. But that made a lot more fun of poor Chris and his smelly, gross tendencies than it did of his date.

Yes, there are references to hugs that are “tighter than a vice and go on for an hour,” the “shorty bus,” and the fact that she’s “for some reason always shouting.”(Side note: Ellen herself didn’t shout.) But is this enough to warrant Palin’s wrath? I honestly don’t know — I don’t have a child with Down syndrome. I do, however, salute including those with the condition in our everyday entertainment, and doing so without patronizing them. This episode did that, and even came off pretty sweet, by Family Guy standards.

Not Funny At All

Last night while I was ironing and folding laundry I watched a little bit of the TV show, America’s Funniest Videos. It’s not a show I watch regularly, and after last night, I may never watch it again.

Two things bothered me greatly about some of the videos shown last night. First, I saw several – more than three – videos of children on bikes or skateboards or motorized scooters and NONE OF THEM WERE WEARING HELMETS OR OTHER PROTECTIVE GEAR.

These videos were of the children falling or crashing. Apparently some folks find that very funny. I’m not one of them. Or maybe since Extreme Makeover Home Edition follows America’s Funniest Videos, the producers feel that they can address any serious injuries by building the participants a new house later.

Regardless of the humor factor of these videos, what message are we sending to children, children who probably already argue with their parents about wearing helmets and protective gear?

The second video on the show that irritated me showed three young women, college age it appeared, who were helping a squirrel get ‘unstuck’ from a tree. The squirrel had gotten its head stuck in a hole in the tree, and the three young women were tugging and twisting in an attempt to help it. It was pretty funny – at least until one of the young women yelled at one of the others, “You’re so retarded.”

Come on, ABC, you should know better than that. At least edit out that part of the video. Again, the show that follows America’s Funniest Videos does a fine job of disability awareness and sensitivity. So, surely AFV could also.

I’m very disappointed, ABC…if you even care.

(the video shown below is not from AFV, but it is representative of the types of things shown on AFV)

Special Olympics Bowler?

Dear President Obama,

I am a single mother of four children, three of whom have significant disabilities. In addition to working a full time job and several part time jobs to provide a home and a life for my children, I also devote a huge amount of time and energy to advocating for their rights.

I want people to know my children for the special people they are. I want their unique talents, their sunny smiles, and their unconditional acceptance of others to be recognized and not ridiculed. It is a never ending battle with school systems, medical systems, recreational organizations, retail organizations and church groups to have my children accepted and not ignored or made fun of.

During your run for the Presidency, I posted on my blog your recorded comments about your support for people with disabilities. I was impressed and I shared those impressions with everyone I could. I voted for you and urged others to do likewise.

But, your comments last night on the Jay Leno show likening your lack of bowling prowess to the Special Olympics left me less than pleased. I trust you didn't mean for your comments to sound disparaging, but for the viewers who may already have been in that group of people who take pleasure in disparaging people with disabilities, your comments verified their feelings.

I would love for you and your family to meet my children. My birth son, Chip, is 18 years old, heading to college this year, and has been a huge advocate for his siblings with disabilities. Ashley, my 14 year old daughter whom I adopted at age 2, is deafblind, has seizure disorder and currently has three brain tumors. But she is also wild and crazy, a typical teenager who can get in trouble at school for cursing at her teacher in sign language (fortunately the teacher didn't know what she was signing), and has a smile that can light a room. Jessica, my 18 year old daughter who was adopted at age 9, is diagnosed with mental retardation and reactive attachment disorder. She is learning to control her aggressive tendencies, and loves nothing more than playing basketball for the Special Olympics. She loves Hannah Montana and the Jonas Brothers and dreams of the day she may marry and have children. And then there's Corey. Corey joined my family 4 years ago when he was 12 years old. He was living on the streets of Baltimore with his drug-addicted, prostitute mother. He is diagnosed with Asperger's Syndrome and developmental delay. He is in JROTC at his high school and dreams of joining the Marine Corps when he graduates. He wants to serve our country in whatever way he can.

These are just four of the people whose dreams of acceptance were harmed by your comments. Will you consider meeting them and showing them that you do support people of all abilities, and that their dreams are just as important as anyone else's?

Thank you, Mr. Obama, and I look forward to hearing from you soon.

Another Role Model - Followup

On March 8th, I wrote about a young woman named Rebecca Alexander. Ms. Alexander is diagnosed with Ushers Syndrome and is slowly going both deaf and blind. She refuses to let her disability define her, and she serves as a role model for young women everywhere - disabled or not.

Today, Ms. Alexander was interviewed on the Today Show. Check out this link for a glimpse into this lovely young woman's life:

With Courage She Faces Being Blind and Deaf

Stealing From The Blind

You *NEED* to visit this link and read the story. But even better than the story, is the video which accompanies it. It's from the ABC television show, "What Would You Do."

Stealing From The Blind

De-GRYS of Love!

Some of my coworkers make fun of me when I tell them I have to watch Extreme Home Makeover each Sunday night because it always gives me the opportunity for a ‘good’ cry. They can’t understand why I want to end each week crying, but it’s the ‘good’ part of the crying that makes the difference.

Last night’s episode featured the Grys family, and no other Extreme Makeover show touched me the way this one did.

The Grys family has fostered 250 children over the years. And, not just any children. They specifically request the infants with the most severe disabilities. The children that are placed with them usually have just the slightest of chance of survival. But the family keeps coming back for more.

Currently the family included the mom and dad, two twenty-something birth children, two fifteen year old twin girls diagnosed with Fetal Alcohol Syndrome and an eight year old boy diagnosed with brittle bone disease and dwarfism.

Three things about this show impressed me more than any of the others. First, the dad was wearing a shirt that said, “Who are all these kids and why are they calling me Dad?” I’m sure that sense of humor helps sustain this family through even the most difficult of times.

Secondly, the dad also made the statement, “If someone tells me a kid will never be able to do something, I will spend the rest of my life proving them wrong.” I’m thinking this man is the triplet I never met. I have a twin, but his making that statement shows me my mother must have had triplets and just forgot one at the hospital.

And finally, at the end of the show, the builder for the family’s new home made the statement, “If you dream it and believe it, you can make it happen.” I love that person and I don't even know her.

God bless you, Grys family, and everyone at Extreme Makeover Home Edition who helped make this family's dreams come true.

What If WE Shared OUR Lives?

As I watched the show Jon and Kate Plus Eight on TLC last night, I started thinking about how great it would be if TLC did a similar show about a family that had a child with a significant disability. Well, maybe it would be great…

How do you think viewers would respond? If they saw my Ashley having dinner with the family, burping as loudly as she could, and then laughing hysterically, especially if her brothers started laughing at her, would they think it was amusing?

If the cameras followed me on the six trips out of bed each night to go to her room, yell at her to get back into bed, find the vibrating toothbrush she likes to put in her mouth to help her get to sleep, and find the exact right piece of wire (must.be.the.red.white.and.blue.one until it must..be.the.purple.one until it must.be….) that she needs to hold while drifting off to sleep, do you think the viewers would be thanking their lucky stars they weren’t me?

Would the viewers feel sorry for her when I insisted she dress herself and put her own shoes on? Would they believe me to be the worst mom in the world when I made her do her own laundry? Would they even understand that a 13 year old deafblind child IS capable of doing her own laundry?

If the viewers had young children themselves, they probably could relate to how long it takes us to get ready to go anywhere. And they could probably relate to always having a mess around the house. But would they be repulsed by tube feedings, seizures and the like? Would it make them stop watching the show?

Would getting to know my family or your family have a positive impact on viewers, or would they do what a lot of society does without the TV show – ignore us and give thanks silently that it is us and not them? I wonder…