My Sister was Bullied by a Radio DJ

Update: Since this blog post was written, the DJ made an on-air apology and announced that his station will be working with local developmental disabilities organizations on an awareness campaign.

By Alex Standiford, Guest Blogger

Hello, my name is Alex, and I have an older sister, named Kellie.  Kellie is 30 years old, and can easily be described as the most loving, caring, and wonderful person I have ever met.  She sees the world very differently than most of us– without cynicism and with complete and utter hope.  To Kellie, each and every person is good, unless proven otherwise.  Anyone who visits her, no matter how frequently, is always greeted with a “Hi!,” an endless, gut wrenching hug, and a sincere declaration of love.  My sister is truly a beautiful person in both body and spirit whose outlook on life I can only hope to someday attain.  In many ways, I look up to her.  My sister passionately loves music and dancing and growing up I remember countless times that I would open her bedroom door to find her dancing and singing at the top of her lungs in front of the mirror.

You may wonder what makes Kellie so special, what makes her story different from any other big sister you or someone you know may have? Well, Kellie happens to have Down syndrome. If you know anything about Down syndrome you know that it is something that unique people, like my sister Kellie, are born with and will live with for their entire lives. Kellie, despite some hardships and challenges she has faced, has always persevered and been positive, friendly, and happy just being who she is.

On Monday, January 21st, my sister was faced with yet another instance of feeling like she was different, or that the fact that she had Down syndrome made her somehow less than other people. On the 21st she accidentally phoned in to Mo’s Radio Show on the Q92 Radio Station based out of Alliance, Ohio, where her manner of speaking was rudely scrutinized and unapologetically berated by both Mo and countless individuals who were “tuned in” at the time.  Mo opportunistically exploited my sister’s imperfect speech through his radio show and made her an object of amusement for all of his listeners– including people that knew Kellie.

“No, say it real slowly. I want to try to figure this out. It’s a little game.”

Anyone would have been embarrassed to be both accidentally aired on the radio and ridiculed for something which one has no control over. What Mo and countless listeners did not consider is what this experience felt like for Kellie. Kellie is self-conscious about her Down syndrome and has expressed her insecurity throughout her life.  Sometimes, she will ask, “Why do I look different?,”  and other times, “Why do I talk funny?”  When it comes with dealing with tough social situations, such as speaking with an unknown person when she accidentally dials the wrong number, she will fumble over her words out of general embarrassment that all people feel in such instances.  Most of the time, people will understand, at least to some small degree, and will deal with the situation with as much compassion and tact as possible.

When it comes to dealing with difficult emotional situations, Kellie processes her feelings very outwardly.  Everyone has an emotional range, and Kellie has the capacity to become so hurt that she will cry for days.  Being the epitome of an optimist Kellie trusts and assumes that everyone is trustworthy and kind.  When someone breaks that trust, it hurts her in a way that is far deeper and more powerful than I could ever understand.  I imagine it feels like the most intense betrayal or the greatest heart break I could ever experience. It is earth-shattering.

Knowing this, now considering the reality of what happened that January afternoon, try to understand the emotional pain, heartbreak, and confusion that my sister had to feel for the sake of public entertainment.  Undoubtedly Mo and the radio studio will continue to hold on to the argument that “the ‘host’ wouldn’t have aired the call had he known the situation in advance,“ that Mo “would NEVER do this with any sense of malice,” but what other sense could there have been in this situation? Mo himself stated, “You don’t know who Mo is? Okay, so I can laugh at you and you won’t know who to call and say you‘re offended. (laughs) Very good.” It was quite clear that Mo knew what he was saying and doing was offensive and inappropriate, but that did not stop him.

“You don’t know who Mo is?”

“No.”

“Okay, so I can laugh at you and you won’t know who to call and say you‘re offended. (laughs) Very good.”

Whether or not the call was made from an individual with Down Syndrome, an individual with a speech impediment, or some foolish prankster looking for attention, the direction and focus of the aired conversations were centered on something that is hurtful and demeaning to numerous people. Essentially, it was entirely ignorant to air the call into live radio at all. The situation would have never escalated had the “host” simply said to Kellie, “I’m sorry, I can’t understand what you’re saying,” or “This is Q92, I think you have the wrong number.” Whether intentional or not, this experience was real and it caused a great deal of hurt to many people, not the least of all to Kellie and it should have never turned out this way.

Luckily for Kellie, she has a strong, supportive family to help her through this time. What I don’t want to see happen is Mo or another jockey like him believe it is appropriate when “somebody calls my show with a little speech impediment– I have a little fun.” The next child or adult to become the focus of this cruel bullying may not be as lucky as Kellie. It could easily be someone who is defenseless to the act, someone who has no one to stand up for them—a child aired mistakenly on the radio who becomes an object of mockery and bullying at school or an adult with a developmental disability who lives alone in a group home. It is never appropriate to make someone who is different from you a bull’s eye on the target of your “humor”. We try to teach our children tolerance and love, but then what hope can we have for them to adopt this mentality when they can hear and see the adults around them blatantly ignoring the lessons they teach.

View the complete radio transcript or view Kelie’s Story on Facebook.

The Arc on the Front Lines of Defending Social Security

The Arc’s Peter Berns speaks out in Washington to protect Social Security from harmful cuts in budget negotiations. (at left is Senator Sheldon Whitehouse of Rhode Island)

The Arc’s Peter Berns speaks out in Washington to protect Social Security from harmful cuts in budget negotiations. (at left is Senator Sheldon Whitehouse of Rhode Island)

Many programs vital to people with intellectual and developmental disabilities (I/DD) have been at risk over the last few rounds of budget negotiations.  Right now, Social Security is in danger of cuts because of talk to change the benefit calculation.  This shift to what is called the “chained CPI” would have horrible consequences for people with I/DD, forcing them to make life and death choices.  The Arc’s CEO Peter Berns was invited to speak at a press conference in the U.S. Capitol today, organized by Senator Bernie Sanders of Vermont.  Berns was joined by representatives from other organizations whose constituencies would be impacted by this benefit cut, including AARP, NOW, the AFL-CIO, and Iraq and Afghanistan Veterans of America.

Good morning. I’m Peter Berns, the Chief Executive Officer for The Arc. We are the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. We have over 175,000 members, and we serve more than 1 million people through our 700 state and local chapters nationwide.

Our nation’s Social Security system is a lifeline for over 56 million Americans including more than 10 million people who qualify because of a disability.

It’s a system that was built up over decades based on our shared commitment to each other. Changing the benefit calculation through the chained CPI isn’t just shaving a few dollars off here and there. We have a moral obligation to make sure that Social Security is there for all Americans in their time of need.

For people with disabilities, the monthly Social Security check can mean the difference between a home in the community, or life on the streets or in an institution.

It can mean the difference between food on the table, or hunger.

It can mean the difference between access to essential medicines and health care, or tempting illness or death.

Many beneficiaries with disabilities rely on Social Security for most or all of their income. With benefits only about $1,100 a month, every cent counts, and over the years the impact of the chained CPI would be real and painful.

Cuts from the chained CPI could also lead to terrible life and death choices for over 8 million very-low income seniors and people with disabilities who rely on Supplemental Security Income. SSI benefits are just over $500 a month.

Sen. Bernie Sanders of Vermont, who organized the press conference, issued a strong defense of Social Security.

Sen. Bernie Sanders of Vermont, who organized the press conference, issued a strong defense of Social Security.

Think about that – $500 a month is just pocket change for many affluent Americans.

It’s a monthly payment for a high-end car, or a plane ticket for a vacation.

But it’s all that many SSI beneficiaries have to exist on, month after month. The chained CPI would cut SSI benefits not once, but twice: first, before the person ever applies for benefits, by lowering the initial payment level, and second, through lower annual cost-of-living adjustments.

With SSI benefits already extremely low, it’s hard to imagine how beneficiaries would get by after cuts from the chained CPI.

In closing, thank you to Senator Sanders, Senator Whitehouse, and Senator Merkley and to our colleagues for bringing us together today to highlight how the chained CPI would hurt working Americans, seniors, veterans, women, and people with disabilities. We stand united against this harmful benefit cut.

The Arc Reacts to Baltimore Ravens Quarterback Using R-Word in Super Bowl Press Conference

Washington, DC – Baltimore Ravens quarterback Joe Flacco, who will play in the Super Bowl this Sunday, used the “r-word” in a press conference last night.  In response to a question unrelated to people with disabilities, Flacco used the offensive term and followed by acknowledging that he shouldn’t use the word.  While The Arc appreciates Mr. Flacco’s quick acknowledgment of his mistake, The Arc invites him to get involved in the national dialogue on why this language is offensive and provide leadership on this issue after the Super Bowl.

“All eyes are on the players competing in this weekend’s Super Bowl, and unfortunately, while under this media microscope, Joe Flacco used a hurtful word to people with disabilities.  After Super Bowl XLVII is in the history books, The Arc would welcome Mr. Flacco in the national dialogue about why this word is offensive to people with disabilities and what fans can do to help us remove the word from our society,” said Peter Berns, CEO of The Arc.

The Arc is a part of the “Spread the Word to End the Word” campaign along with other organizations to raise awareness of the effects of the “r-word”.  The Arc has also been involved in efforts to remove the word from federal health, education and labor statutes, supporting Rosa’s Law in 2010.  And just this week, the Social Security Administration announced its intent to remove the word from its work.

One Step Closer to Erasing the R-word

This week marks a great victory for disability advocates across the country.  The Social Security Administration’s (SSA) announcement of its proposal to stop using the term “mental retardation” and start using “intellectual disability” in its official Listing of Impairments and other regulations, is a victory larger than it may seem to many.  This decision brings us one step closer to a world free of the R-word.

Just think, this victory comes just over two years after President Obama signed Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes.  Some might think two years is a long time, but the thousands of advocates like me who have spent decades working in the disability policy field know that change like this doesn’t come quickly or easily.

Today’s announcement is all the more remarkable because SSA takes this step voluntarily. Rosa’s Law did not specifically include Social Security or Supplemental Security Income, but SSA is making this change because it’s the right thing to do.

We know how powerful words are.  Words also represent you and your viewpoint, and we can all be happy that SSA is taking a step to change the words being used in their official documents to better promote the civil rights of individuals with I/DD.  The R-word isn’t just a word, it is a stigmatizing term that the disability community has been fighting against for years, and this week we are a step closer to banishing it from our government and our society.

But it’s not over yet – we need your help to keep the momentum going!

SSA will not be able to finalize this change until it goes through the rulemaking process required of all federal agencies.  SSA issued its Notice of Proposed Rulemaking to stop using the R-word on Monday, January 28th.  The public has 30 days to comment – and SSA needs to hear from you!

Please visit the Federal eRulemaking portal at regulations.gov.  Use the Search function to find docket number SSA-2012-0066 and then submit comments in support of ending the R-word. Comments are due on February 27, 2013.

The Arc Applauds Social Security Administration’s Ending the Use of the “R-word”

Washington, DC – In an historic change for people with intellectual disabilities (ID), the Social Security Administration (SSA) announced its intent to stop using the phrase “mental retardation” and start using “intellectual disability” in its official Listing of Impairments.

This change, which The Arc and many other organizations advocated for, comes a little over two years after President Barack Obama signed Rosa’s Law.  In 2010, The Arc was very involved in efforts to end the use of the “r-word” and worked to enact Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes.  While the legislation did not cover programs such as Medicare, Medicaid, and Social Security, it was an important stepping stone for shaping future legislation and efforts that will transform these outdated terms in all federal laws.  The Social Security Administration’s actions are a welcome result of the success of Rosa’s Law.

“Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights.  This is an important moment for people with disabilities because Social Security is a lifeline to so many – it allows people with ID to live in their communities and be as independent as possible.  And now, the language the agency uses will reflect the respect people with ID deserve,” said Peter Berns, CEO of The Arc.

The proposed regulation published today has a 30 day comment period, and we encourage people to submit comments in support of the proposed regulation online by February 27, 2013.

News from the Social Security Administration

Social Security Commissioner Michael J. Astrue shared with The Arc the following note regarding a welcome change in terminology in the Administration’s Listing of Impairments.

I am pleased to inform you that today we put on public display at the Office of the Federal Register a Notice of Proposed Rule Making (NPRM) to replace the term “mental retardation” with “intellectual disability” in our Listing of Impairments and in other appropriate sections of our rules.

Many of you have rightfully asserted that the term “mental retardation” has negative connotations, has become offensive to many people, and often results in misunderstandings about the nature of the disorder and those who have it.  Partly in response to these concerns, Congress passed Rosa’s Law, which changed references to “mental retardation” in specified Federal laws to “intellectual disability,” and references to “a mentally retarded individual” to “an individual with an intellectual disability.”  While Rosa’s Law did not require us to make any changes to our existing regulations, we are doing so in the spirit of the law and to join other agencies and organizations who are adopting the term “intellectual disability.”

Beginning Monday, you can view the NPRM online at www.regulations.gov.

Thank you for your continued support and cooperation with the Social Security Administration as we work to serve the needs of the American public.

Michael J. Astrue
Commissioner

January 25 Is EITC Awareness Day

Friday, January 25, 2013 is the Seventh Annual Earned Income Tax Credit (EITC) Awareness Day. Do you know if you are eligible for this important tax credit? The IRS is reaching out to underserved taxpayers such as people with intellectual and developmental disabilities to make sure they are aware of the credit and how to claim it. The EITC can increase federal income tax refunds from $1 to more than $5,891, depending on individual circumstances which can include workers with disabilities and workers in non-traditional situations such as grandparents raising grandchildren. You can find out more about the Earned Income Tax Credit at EITC Central, a special website set up by the IRS.

Join us at the 2013 Disability Policy Seminar

Disability Policy Seminar 2013Does what happens in Washington, D.C. really matter? Can you make a difference? You bet! Every day millions of Americans with intellectual and developmental disabilities are impacted by the public policy decisions – big and small — made by their representatives in Congress.

And each year, hundreds of advocates attend the Disability Policy Seminar in Washington, D.C. to learn more about and discuss the hottest topics in disability public policy. We invite you to join us April 15-17 for an opportunity to advance the grassroots movement for people with I/DD and make sure your elected officials know what’s important to you.

Monday and Tuesday, April 15 and 16, are filled with informative in-depth sessions from disability policy experts and opportunities to network with others from your state. And, we’ll have a “newcomers” track with sessions designed for people who are new to federal public policy advocacy to answer questions and give you the background you need. Then the event culminates on Wednesday, April 17 with a breakfast on Capitol Hill before you personally meet with your elected representatives and make a case for their cause supported by information about the issues provided during the Seminar.

Register now and book your room at the Grand Hyatt in downtown Washington D.C. for a special early registration rate at www.disabilitypolicyseminar.org and find out more details about the stimulating program on tap for this year’s event. But act soon – special rates on rooms ends March 12.

DPS Partners

Hosted by: The Arc, United Cerebral Palsy (UCP), Association of University Centers on Disabilities (AUCD), American Association on Intellectual and Developmental Disabilities (AAIDD), National Association of Councils on Developmental Disabilities (NACDD), and Self-Advocates Becoming Empowered (SABE)

Sponsored by: Autism Society and NADD, an association for persons with developmental disabilities and mental health needs

Be a presenter at this year’s convention!

We are currently seeking proposals for innovative, motivating, and interactive presentations for our 2013 National Convention in Bellevue, Washington. Next year’s theme “Achieving Momentum” reflects The Arc’s continuing progress and forward movement. Each year, we are growing not only as an organization but as a grassroots movement working in communities across the country to promote our mission. Utilizing new technologies and innovative programs, we are extending our reach and more importantly making more of an impact.

The Arc encourages proposals that reflect our core values, involve people with intellectual and developmental disabilities (I/DD), family members, advocates and/or professionals, and/or provide opportunities for participants to walk away with a vision and concrete plan for action.

As we continue to achieve momentum in all we do as an organization, we have specific topics we want to discuss during next year’s convention:

  • Technology: Presentations/Sessions that introduce and/or educate individuals about how technology can improve the lives of individuals with I/DD by assisting them in school, work, recreational activities, and facilitate better inclusion in their communities either through assistive technology, online educational tools or better communications and operations systems for more effective delivery of services.
  • Family Support: Presentations/Sessions that demonstrate creative supports for family members as they work to help promote their loved ones’ full inclusion in the community. This can include community activities or groups, programs, community tools or online resources that can be utilized by family members to assist them with advocating for their family members, communicating with their family members and each other, planning for the future and accessing services and supports.
  • Chapter Innovations: Presentations/Sessions that demonstrate innovative programming or initiatives of chapters of The Arc or collaborations with community partners which are propelling the intellectual and developmental disability community forward, either by providing innovative avenues for inclusion, increased competitive employment, better and/or more efficient services and supports, or the development of innovative leadership, collaboration, fundraising/friend-raising, or operational activities that can serve as best practice examples for other nonprofit organizations.
  • Growing the Grassroots: Presentations/Sessions that demonstrate progressive and impactful advocacy for people with intellectual and developmental disabilities at the local, state, regional or national level through the development and mobilization of a strong grassroots advocacy community.

Please keep in mind that concurrent sessions will be held between August 2-4, 2013. As a presenter, you must be available on these dates. We encourage self-advocate participation in all sessions as participants and presenters. Submit your application using this form.

The deadline for submission of presentation ideas is February 1, 2013. Selection of presentations will take place on or about March 29, 2013. Please contact Laurie Edson, Director of Chapter Excellence: edson@thearc.org if you have any questions.

What Do You Think About Autism NOW?

Have you ever visited www.autismnow.org? We’d like to know what you think. Did you find what you were looking for? Do you have any suggestions for how we might improve? Take our short survey to help us ensure that this website is serving you well.

If you’re not familiar with autismnow.org, we highly recommend you take a look. Autism NOW: The National Autism Resource and Information Center is a project of The Arc funded, in part, by a grant from the Administration on Intellectual and Developmental Disabilities. It is designed to be a dynamic, interactive and central point of quality resources and information for people with Autism Spectrum Disorders (ASD) and other developmental disabilities as well as their families and others. In addition to autismnow.org, this project has created events, online education opportunities and a vibrant online social community dedicated to collecting and sharing quality information, vetted by experts and easily accessible. If you are an individual who identifies as being on the Autism spectrum or are just interested in getting more information about ASD, we invite you to explore and share the site and then take the survey if you have some feedback you’d like to give.