Marriage Equality for People with Disabilities

Hi Folks, Lynn here at VSA Texas. While many Americans celebrated the SCOTUS ruling, legalizing gay marriage in all 50 states, I saw many Facebook posts from my friends in the disability community, stating that nothing has changed for them. There are still legal barriers to marriage between two people with disabilities. In doing research for this blog, I looked up a few disability advocacy groups and found some interesting information. I wrote this blog to encourage dialogue about the marriage inequality still present in the disability community in hopes that we can progress forward in marriage equality for all people.

On Facebook, the organization Marriage Equality for People with Disabilities shared Larry Drain's post:

“Dear President Obama:

             “One of the quotes I heard in the last couple of days following the marriage equality case was something like ‘at last love can be love...’

            “It can't...

            “I write to you today about another marriage inequality, an inequality suffered by thousands and thousands, an inequality invisible and never talked about, an inequality no one fights to remedy, an inequality based on federal statute: the attack on marriage of the disabled and senior citizens.

            “Thousands and thousands of couples in this country find themselves unable to either get married or stay married because of the financial penalties imposed on them by federal law. It is unfair. It is wrong, and, whether it is legal or not, it is discrimination that hurts thousands of innocent American citizens.”

I also found the following information at http://www.1800lawfirm.com:

            “Getting married may affect your disability benefits in a variety of ways. This is largely dependent on what type of benefits you receive—Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI).

            “If you receive SSI benefits, you likely already know that eligibility is determined based on your income and financial resources. Once you get married, the SSA will ‘deem’ a portion of your spouse’s income to your record. Essentially, this means that they will consider your future husband or wife’s income to be your income as well. This may significantly reduce your monthly payment or even cause the SSA to terminate your benefits altogether. This is just one financial aspect that people with disabilities face.”

For more detailed information, you can request a pamphlet for SSI and SSDI explaining in detail your benefits and what affects your benefits directly from the Social Security Administration’s website at http://ssa.gov/.

Last, here are some personal thoughts from Dave Chapple, a gentleman with a disability that we all know well here at VSA Texas:

Dave and Kate

at their Commitment Ceremony

            “Kate and I were under the understanding that we could not get legally married because it would negatively affect our SSDI and Medicaid. So instead of having a legal wedding ceremony we had a commitment ceremony in front of our families, friends, and God and we have been living as husband and wife ever since. However, according to the state of Texas, we are just roommates. 

            “One day we were looking on line at Medicaid income limits for our future employment and we came across something about married couples. To our surprise, the limits were just about exactly the same as we have now without being married. So we wanted to look farther into the possibility of becoming legally married and contacted a special needs consultant and in turn, she contacted a disability attorney. With their help, it was determined getting legally married would not affect our benefits but as we did before we have to make sure we stay under the income limit. 

            “Like I said before, on June 1, 2013, we had a ceremony where we got committed to each other in front of our families, friends, and in God's eyes. On every August 4, we go to Joe's Crab Shack to celebrate our anniversary, our first date, and the love we have for each other. However, on this August 4, 2015, we are still going to Joe’s Crab Shack, but before our dinner, we are going to have a little ceremony to legalize our marriage and invite 50 of our family and friends to celebrate with us.”

While Dave is finally now able to make his marriage official, many other people with disabilities still face impossible barriers to get married. What about you? Are you married, or are you still waiting for the laws to change? Please share your thoughts and experiences in the comments section below!

Guest Blog: Victor Martinez on the Opening Minds, Opening Doors Showcase!

            This was my second time attending a presentation of Opening Minds, Opening Doors, held at the Capital City Event Center. When I went last year, I had been on the board of directors for VSA Texas for only a month. VSA Texas sponsors events like this that feature art and people with disabilities. Their goal, in this case, is to combine storytelling and acting with public speaking so that the participants, or self-advocates, as they are commonly referred, can bring their stories to the general public. The disabilities include muscular dystrophy, multiple sclerosis, limb loss, cerebral palsy, autism, dyslexia, and epilepsy. 

           The purpose of this event is to give the public an opportunity to participate as an audience in the creative and insightful speaking abilities of the participants. The delegations came from Austin and El Paso. The El Paso group members are affiliated with the Youth Leadership Forum, sponsored by Volar Center for Independent Living. "Volar" means to fly. This event, which took place on February 5, allowed the participants' voices to soar. The late morning performance began at around 11:45 AM, with an introduction by Eric Clow and an explanation about OMOD.

            The first speaker, Jamie Martinez, who hails from El Paso, began by telling a story entitled "Spring Break." This involved visiting her grandmother in San Diego. It was full of humor, especially the part about the dead cow they smelled, and eventually saw. The image was horribly funny, and it got Jamie and her grandmother giggling, picturing the cow's feet in the air and stinking to high heaven. That was the icebreaker for the event.

           Next up was Alina Arredondo who talked about her grandfather, and all he had done for her while he was alive, and how he was continuing to inspire her from the great beyond. She recounted his influence in a story called, "To My Heart in Heaven." Viejillo was his name. He had encouraged her to excel in high school, (and later after he passed) go on to college, and she recently got accepted to law school. It was a story about faith and doing what was expected of the heart.

           ROTC was the theme of the next speaker as he started off by barking, "Attention!" That got the audience's attention. Then, Paul Nathan told the story of how he entered ROTC as a freshman, but because of his disability could not participate fully. As circumstances would have it, he found a place for himself as a medic by attending to the injuries of the corps, acquiring a medic's certification, and earning respect from others. When graduation had become a viable cadet. He ended the speech by the order, "Dismissed!" Though we were not leaving, because it was far from over.

            An ensemble of four--David Chapple, Renee Lopez, Kaye Love, and Eric Clow--took over from there with a piece called "Close Encounters of the Public Kind." This episode was largely a tongue-in-cheek account of how the public views people with disabilities. Though funny, this presentation carried some right-on observations by the disabled on stage.

             Speaking about her bus trip to California in a piece called "Disneyland Here I Come," Roxela Confresi talked about her great adventure westward. Speaking with the aid of a Dynavox machine, she eloquently described her experiences which she couldn't have done without the loving support of her family.
            "Cell Phones" was the topic presented by Stephanie Gonzalez in which she explored the irony of a device that was probably intended to make us more connected, but in many regards, has left us isolated in our own little worlds. She left the audience with the image of the people we love staring down at their cell phones oblivious to the world around them, and denying themselves of human affection.

            Roxana Confresi, sister of Roxela, discussed returning to college in "Back to School 10 Years Later." It was another example of how people with disabilities can overcome obstacles of apprehension and new surroundings.

             Another highlight was this guy named Chuy Duarte. Ironically enough, he talked to God a lot, and guess what Chuy means? It's a Spanish nickname for Jesus. He talked about miracles, and how in spite of what the doctor said, he was determined to walk again. He told the story about his first physical therapy session when the therapist told him he would never walk again, but he was determined to start walking right away. Which he did! He took 10 steps that first day through sheer willpower and by the grace of God. The story was very inspirational, and it brought me back to the idea that prayer, hope, and determination play a large part in our recovery.

            The final presentation of the early afternoon was another ensemble consisting of five people--Ashley Butler, Kamand Alaghehband, Marielle Abrams, Danny Taylor, and Laurel Coppock. The premise for this final episode was that a fairy godmother was able to grant wishes to all the participants. They recounted their most far-out fantasies.

            All in all, the event was all that it was cracked up to be - entertaining, inspiring, and relevant. Entertaining because it had humor that tickled the audience; inspiring because of the courage and resilience displayed in the stories; relevant because the stories reflected what was important in the lives of the storytellers. I look forward to the next Opening Minds, Opening Doors event, and I invite the readers of this blog to attend an event of theirs, support a worthy endeavor, and be entertained by an inspirational group of people.

Disability in Cinema: A Discussion

Happy Tuesday everyone!

For my first blog entry in awhile (my colleagues just have so many wonderful things to say!), I thought I would jump into a discussion that is becoming more audible in recent months- that is, the use of able-bodied actors to portray people with disabilities on screen.  The recent success of “The Theory of Everything,” starring Eddie Redmayne as Stephen Hawking, provides a pertinent vehicle to discuss a topic that has always troubled members of the disability community.

Eddie Redmayne as Steven Hawking in "The Theory of Everything"

Why is it that after we’ve long abandoned the time where women, not allowed on stage, were portrayed by men, and white actors mimicked those of other races by using tools such as ‘blackface,’ this trend of using able-bodied actors pretending to have disabilities is still commonplace?  Some people may point out that in certain films, such as “The Theory of Everything,” an able-bodied actor may be necessary to portray scenes prior to the character’s disability.  Our own Eric Clow, director of our Opening Minds, Opening Doors and resident creative insight, pointed out that artistic elements, such as dream sequences, might also be difficult to execute with an actor with disabilities.  However, these certain logistics seem to overshadow the more important discussion- even twenty-five years after the ADA, people with disabilities still struggle to be properly represented in the minds of the public.  

Marlon Brando in "The Teahouse of the August Moon,"
where he donned "yellowface" and a Japanese accent to portray the character of Sakini.
Is this any different than an able-bodied actor pretending to have a disability?

Where in the past, finding actors with disabilities may have been difficult, this is no longer the case. As the Executive Director of VSA Texas, Celia Hughes, aptly puts, “the time has come when characters with disabilities can be played by actors with disabilities. No longer do we need to have an able-bodied actor try to figure out how to be paralyzed, or blind, or intellectually challenged. We have talented people with disabilities who are eager to play these roles." She continues on to point out that this seems to be an American problem, as "they have been casting actors with disabilities in Europe for many years. It's time Hollywood came out from under the rock."

Why do you think this phenomenon of casting able-bodied actors in roles of people with disabilities is still the norm? Why has it not become as offensive as say, "blackface"? At the end of the day, there doesn't seem to be a difference; both are pretending to be something you aren't, where there are many capable individuals that don't have to pretend. It's an intentional exclusion of a whole group of people based on preconceived notions about their abilities. Isn't it time we put an end to this? Tell us how you feel in the comments section!

An Ode to Media Deadline Management: A How-To with Lynn Johnson!

Media planning is the art and science of ensuring that the adverts our clients want, appear in the right place at the right time to ensure they reach the best and widest audience. I love this definition. RIGHT TIME AT RIGHT PLACE. 

So, listen to this hypothetical scenario.  Boss comes in and says she has booked an internationally acclaimed Dance Choreographer to come in and do master classes with our dancers with disabilities and we’ll be doing a final performance open to the public.  Questions that should already be going through your head are:  When, Where, Who, What, Why (my last input is cost?).  At that point, you maybe have no answers except that he’s coming within the next two months.  SO:  Important piece of information here.  Know your media deadlines for your city, i.e. appropriate magazines, TV, Radio, PBS stations, local newspapers, and online calendars.  Media deadlines are timeframes set by each media organization as to when you must have your information to them to enable them to post to their readers and listeners.

Important Step:  You should already have a media list comprised of emails, websites, and phone numbers of who to contact to find out their media deadline schedule. 

Hard at work!

When I started out researching a media list of contacts for VSA Texas, I looked at the existing media list for Austin and then looked up all the publications, TV Stations, Radio Stations, on line Community Calendars. After, I expanded my research to include other cities where VSA Texas has events, workshops and classes.

Saying that this doesn’t take a little work is not exactly truthful.  You must be diligent in gleaning information from each of the media outlets you are interested in.  If you can't find deadlines for a certain organization online, call them! Mention you're a nonprofit and see how they can help you promote your event.

Next Step:  Make yourself a non-complicated spreadsheet (can be in Excel or if you're more comfortable, on paper with a ruler and pencil) with a timeline guide so you can plot out the deadlines for your Press Release, PSA and any other form of communication you want listed for your hypothetical choreographer.

To sum up:  A checklist

1.       Include contact information on every press release or PSA you send out. This means name of person, phone number and email. . Do not give multiple contacts as it only confuses people.

2.       Provide in the first paragraph  the details: who, what, when, where, why , and what the costs may be

3.       In your press release, write a personable paragraph or two about event- Don't be afraid to be creative! Be clear in what you want to say and engage your audience.

4.       Don’t forget your sponsors information (if you have a sponsor). That includes website, facebook information, etc.

5.       Always include the correct address of the event.-You’d be surprised how obvious details often get forgotten! The year is also especially important, especially for annual events.

6.       Proof read, proof read, proof read.

NOW- if you find you haven’t been supplied all of the above, or you are getting conflicting information, I remind everybody they have a specific timeframe! I usually stretch the truth about their deadline to give me some breathing room to meet the publications deadline.

It comes down to getting your information, making your deadline chart and keep reminding everyone who is planning the event how excited people will be when they learn of the great dance opportunity (or whatever your own event is!).  Think of it like your own “The Field of Dreams-” if you build it, they will come-but if they don’t know about it, they won’t. 

Thanks for your time today everyone! I hope my tips are helpful in your own planning, media-related or otherwise!

VSA Texas Unsung Hero of the Week: Chris Strickling!

I want to tell you about another unsung hero of VSA Texas.  For over 14 years, Chris Strickling has graced us with her talent and generosity.  Starting in 2000, when she approached me to help make her vision of an inclusive community of people with diverse disabilities bringing their stories to life on the stage, Chris has been a selfless supporter of the celebration of the ordinary, and sometime extraordinary, lives of people with disabilities.

 

Myself, Chris and Terry

Beginning with a one-week Actual Lives Austin performance workshop –yes, a promised “one week” workshop – we launched what turned out to be a 12 year adventure, eventually involving Bob Tolaro, Allison Orr, Olivia O’Hare, Tanya Winters, Susie Angel, Juan Muñoz, Gene Rodgers, Dave Dauber, Carol Gilson, Frankie Ramont, Laura Griebel, Terri Stellar, Thor Armbruster and many others too numerous to mention.  And who could overlook Terry Galloway, the godmother of Actual Lives, uncensored (kind of), real-life, and just plain real. We went on to perform more than 48 original performances in Austin, Dallas, Georgetown, and Washington, DC, the latter at the invitation of the VSA International 2004 International Festival. As we explored the possibilities of Actual Lives, Chris helped bring this unique theater experience to young adults with disabilities.

Chris was also an integral part of starting our summer camp program for youths with disabilities. Our first summer camp workshop for participants ages 13 and up was an empowering and transformative experience for everyone, including the campers, volunteers, teaching artists, and VSA Texas staff.  Daniel, shown in the picture below, as well as many others, have participated in VSA Texas summer workshops ever since. 

Chris and Daniel!

And then, in 2013, Chris joined the ranks of the Opening Minds, Opening Doors: Promoting Self-Advocates as Speakers team.  She worked with OMOD Coordinator Eric Clow to develop the initial training curriculum based on the Actual Lives model, and then recorded teaching videos that will inform our instructors and participants throughout the life of the project.

Thank you Chris.  As we continue our work with people with disabilities from all “walks” of life, we will raise high the flag of inclusion, disability rights, real talk of human sexuality, personal dreams, hopes and possibilities. Your work continues. Happy retirement.  We look forward to visiting you at your humble casita in Ishmael, Mexico.

All our love, 

Celia