The People Who Are the ‘R-Word’

August 24th, 2010

BLOG POST BY DAVID HINGSBURGER:

It’s in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the ‘politically correct’ and the ‘word police’ and making ridiculous claims about having to ban the concept of a ‘fire retardant’. Last I looked there’s never been a protest about products that protect from fire. Last I looked there’s only ever been protests about the use of a word that demeans a group of people.

No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There’s a huge difference between a thing and a person – but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt.

People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by … no, I won’t say her name here … they say ’she was saying that of herself not anyone else’ – um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what’s at stake – their personal liberty to hurt others?

It’s time to recognize that the ‘R’ word is an attack against who people with with intellectual disabilities ‘are’, it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the ‘people’ who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they ‘don’t understand, poor dears’, that they ‘miss the point, little lambs’ so therefore their anger need not be feared as justified.

The people who ‘ARE’ what the ‘R’ word refers to have a long history.

They have been torn from families and cast into institutions.

They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state.

They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi’s thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats.

They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out.

They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship.

That they are a ‘people’ is questioned even though they have a unique history, a unique voice, a unique perception of the world.

That they are a ‘community’ is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future.

That they are have a legitimate place at the table is questioned simply because no one’s ever offered a seat.

They are a people.

They ask for respect and receive pity.

They ask for fair play and are offered charity.

They ask for justice and wipe spittle off their face.

They ask to silence words that brutalize them and their concerns are trivialized.

They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as ‘gifts’ as ‘tokens’ and as ‘charity’. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.

It is a voice not yet heard.

It is a voice not yet respected.

It is a voice not yet understood.

But it is speaking.

And when it is finally heard. The world will change.

The ‘R’ word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

Local Program Leverages Internships for Employment

August 11th, 2010

Goodwill Columbus trains eligible individuals with developmental disabilities and places them in paid internships with the goal of obtaining competitive  employment within businesses in Franklin County. To be eligible for the LIFE Works program, individuals must:

  • Be referred to Goodwill Columbus by the Ohio Rehabilitation Services Commission (ORSC) and the Franklin County Board of Developmental Disabilities (FCBDD).
  • Be 18 to 25 years of age or older.
  • Be a resident of Franklin County.
  • Be unemployed.
  • Be able to work independently for up to 25 hours a week by the end of the program.

Individuals accepted into the LIFE Works program will first  receive vocational classroom training, free-of-charge, through the Workforce Development division of Goodwill Columbus, and afterwards be placed into one or multiple paid (minimum wage) on-the-job internships with area businesses for up to 18 weeks.  Upon completion, individuals will be trained and capable of competing for quality jobs in the local workforce.

For more information, please contact Stacy Collins, Goodwill Columbus, at (614) 583-0283.

DSRTF Appoints New Executive Director

July 16th, 2010

Palo Alto, CA – The Down Syndrome Research and Treatment Foundation (DSRTF) today announced the appointment of Chris Rose as the foundation’s Executive Director. Chris will assume the leadership position following Dr. Michael Harpold’s decision to focus full time on the foundation’s expanding research program.

Chris joins DSRTF, a leader in funding biomedical research that will accelerate the development of treatments to significantly improve cognition for individuals with Down syndrome, at an exciting time for the organization. With the identification of five drug targets, the viability of DSRTF’s founding premise has become apparent. Cognition research holds great promise for those with Down syndrome, increasing the ability of individuals with Down syndrome to live independently, to be gainfully employed and to be fully integrated in their communities.

“The promising results of the research DSRTF has funded to-date confirm the organization’s commitment to its mission, the viability of the DSRTF research model and the tremendous opportunity for expanded funding for compelling Down syndrome cognitive research,” states Chris. “With a focus on cognition research, grounding in hard science and the utilization of a multi-disciplinary, collaborative approach, DSRTF has a realistic opportunity to deliver a breakthrough for the Down syndrome community. I am excited to work with Dr. Harpold and lead DSRTF through the next stage of its important mission to open up opportunities for individuals with Down syndrome.”

Most recently Chris served as the Executive Director of the nationally acclaimed Meth Project. He was primarily responsible for strategic fund development, program oversight and partner development as the Meth Project expanded its activities from Montana, the first state to deploy the large-scale methamphetamine prevention program, to seven additional states.

Prior to his successful transition to the nonprofit sector with the Meth Project, Chris served as an executive with a number of public and private technology companies, with responsibility for sales, business development and corporate development. His broad experience in these roles offer DSRTF the ability to develop the stable, sustainable revenue required to bring the organization closer to its goal of identifying therapies to improve the cognitive abilities of individuals with Down syndrome.

“Chris is an exceptionally talented person who has the energy, focus, vision and leadership skills to elevate DSRTF and its mission,” said Vince Randazzo, DSRTF’s Board President. “I am excited that he has agreed to be the chief public champion for DSRTF’s mission, which has come a long way under Dr. Michael Harpold’s leadership.”

As Executive Director of DSRTF, Chris will work closely with Dr. Harpold in his role as Chief Scientific Officer and Na’eem Salaam, Director of Finance and Operations. Dr. Harpold has been instrumental in developing and executing a research strategy that has moved research from the discovery phase toward the clinical phase at a pace unprecedented in this field. Dr. Harpold will continue to drive the organization’s research agenda and lead the DSRTF’s world-class Scientific Advisory Board.

The DSRTF Board of Directors is delighted to have Chris Rose at the helm of the organization at a time when both researchers and the general public are becoming increasingly aware that research advances over the next decade will enable a wider range of opportunities for people with Down syndrome.

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About DSRTF: The Down Syndrome Research and Treatment Foundation (DSRTF) is a national nonprofit focused on stimulating biomedical research that will accelerate the development of treatments to improve significantly cognition for individuals with Down syndrome. The foundation seeks a world in which people with Down syndrome are fully included in academic and social environments and where they can live independently as adults, if they so choose.

Research Study Announcement

July 14th, 2010

The University of Pittsburgh Medical Center and the Down Syndrome Center at Children’s Hospital of Pittsburgh are seeking adults (ages 30 and above) with Down syndrome to participate in a research study involving a MRI and a PET SCAN. The research study will be aimed at imaging amyloid in the brains of healthy patients with Down syndrome. Amyloid plaques are found in the brains of people with Alzheimer’s disease. The gene that makes the amyloid protein is on chromosome 21. Individuals with Down syndrome have the extra chromosome 21 and may also develop amyloid plaque deposits (which are seen in Alzheimer’s disease) much earlier than in people without Down syndrome. These amyloid plaques can begin to develop in the brain many years before any memory loss occurs. Until this time, determining the presence of amyloid plaques in the brain could only be
analyzed through autopsy.

The study will consist of two (2) visits (which can be completed during a single, two-day stay in Pittsburgh). The first visit will take at least 4 hours and includes: description of the study, reviewing the procedures of the MRI and PET SCAN via video and pictures, signing a consent form, having a relative or caregiver complete a set of questionnaires, and having the adult with Down syndrome complete a range of neuropsychological tests. The
second visit will take around 4 hours and will include: review of the procedures of the tests; the MRI which will take approximately 30 minutes; and the PET SCAN which will take approximately 1 hour. In addition, there will be a blood draw.

Participants will be compensated for their time and expenses. Funds are available for participants and caregivers who reside a few hours from the Medical Center to stay overnight in the Pittsburgh area. This will allow the two study visits to be completed over two consecutive days.

Please call Sheila Cannon, project coordinator, at the Down Syndrome Center at Children’s Hospital of Pittsburgh (412-692-7963) or Sarah Clayton, at the University of Pittsburgh Medical Center (412-235-5485) if you would like additional information.

LRS Files Amended Complaint in Doe v. State of Ohio lawsuit

June 4th, 2010

The Ohio Legal Rights Service (LRS) filed an amended complaint in the Doe v. State of Ohio class action education lawsuit. The complaint, filed in U.S. District Court for the Southern District of Ohio, Eastern Division, addresses inadequate funding for Ohio’s special education programs and unlawful discrimination against students with disabilities.

Specifically targeted in the complaint is Ohio’s evidence based model (EBM) for funding special education services that fails to ensure sufficient revenue to school districts to provide students with disabilities a free and appropriate public education (FAPE), including all necessary related services. The complaint also identifies other major shortcomings of Ohio’s funding system which:

  • Provides insufficient funds for preschool special education units;
  • Promotes an inadequate student to teacher ratio of 20:1 and a teacher to aide ratio of 2:1, both ratios conflict with state standards;
  • Caps funds for home instruction and catastrophic costs that leaves some students without services and school districts failing to be in compliance with the Individuals with Disabilities Education Improvement Act (IDEA);
  • Creates a funding formula that does not factor in the costs of modifications to facilities serving children with disabilities; and
  • Discriminates against children with disabilities by unnecessarily segregating them from regular classrooms.

Sue Tobin, LRS lead attorney, said, “This case is for all those children in Ohio who are denied special education services because of a lack of funds. Two named plaintiffs in the case are students who are eligible for but are not receiving any educational services because of inadequate funding.” Tobin further stated that the Doe case also seeks federal court enforcement of the Ohio Supreme Court’s decisions in the general education funding case of DeRolph, which have never been implemented.

In July 2008, Federal Judge John D. Holschuh gave his preliminary approval of a consent order in the Doe v. State of Ohio lawsuit. That settlement brought Ohio into line with federal regulations regarding the Ohio Department of Education’s monitoring of school district special education programs and investigation of complaints filed by parents or students. The consent order included a number of procedural safeguards resulting in transparent processes, increased notices to parents and more timely complaint decisions.

In Doe v. State of Ohio, LRS represents nine students with disabilities, their parents, and a plaintiff class of over 265,000 Ohio students with disabilities. LRS brought the case to ensure that state officials meet their obligations to ensure that children with disabilities receive a FAPE under the IDEA. Plaintiffs seek relief under IDEA, Section 504 of the Rehabilitation Act of 1973 and the U.S. Constitution.

If you would like more information, contact Thomas Hemmert at 614-466-7264 or themmert@olrs.state.oh.us.

5K Run for CODSS Raises More Than $10,000 for DS Research

May 21st, 2010

DUBLIN, Ohio (May 20, 2010) – The 2FGR Inaugural 5K Run for the Central Ohio Down Syndrome Society (CODSS) raised more than $10,000 tonight to benefit the organization’s mission of advancing Down syndrome research.

The run was held at the Dublin Community Recreational Center, and drew more than 440 registered runners and walkers from around central Ohio. With families and spectators on hand to cheer-on the participants, total attendance was estimated at more than 500 people – a phenomenal turn out for a first-time event.

The run also included a 40-meter Kids Fun Run that paired kids with Down syndrome and other special needs with a peer running Buddy.

“It was absolutely awe-inspiring to see so many people come out to not only celebrate health and well-being, but to support families living with Down syndrome and Down syndrome research,” said CODSS president & CEO, Lito Ramirez. “By being here tonight, these runners, walkers and families honor all people with Down syndrome, and recognize their incredible gifts and contributions to the community.”

About Central Ohio Down Syndrome Society
The Central Ohio Down Syndrome Society is an independent 501(c)(3) not for profit organization that empowers individuals and families living with Down syndrome by advancing the cause of research, advocating on their behalf, and educating them on life skills that enable them to lead meaningful, independent and healthy lives.

About 2FGR
2FGR is a Dublin based running group whose mission is to promote community and healthy lifestyles.  2FGR meets at the Dublin Community Recreation Center every weekday morning at 5:30 AM.  Anyone is welcome to participate.

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*Photos courtesy of Michael Ivey

Veteran Strategic Communications & Donor Development Professionals Join CODSS Board

May 4th, 2010

As part of our on-going effort to recruit talented professionals and strategic skill sets to our board, we are pleased to announce the addition of the following new board directors to the CODSS board:

Jenny Camper, President, Lesic & Camper Communications
Jenny Camper has more 20 years of experience in statewide media relations, government, campaigns and strategic communications. Under her leadership, the Columbus office of Camper & Lesic works with corporations, non-profits, national and state associations, issues campaigns and government agencies. Jenny’s current client list includes the Pharmaceutical Research and Manufacturers of America (PhRMA), the Ohio Air Quality Development Authority, Credit Suisse and Pfizer.

For PhRMA, Jenny promotes various prescription drug assistance programs and chronic disease prevention and management to Ohio health and social service advocates, patients and elected officials.  She and the Columbus office of Lesic & Camper have presented a number of statewide and regional conferences focused on building the bio-pharmaceutical industry in Ohio, providing access to medicines and building awareness of the impact of chronic disease.  Jenny also supports the work of PhRMA lobbyists and industry advocates through strategic communications.

Cara Cloyd, Principal, Cloyd Philanthropic Counsel
Cara Cloyd, J.D., has more than 10 years experience in philanthropic development.  In 1998 she joined the James Cancer Hospital & Solove Research Institute as Associate Director of Development.  During this time she helped oversee significant expansion of the James’ fundraising capacity with private gifts growing from $2.7M in 1997 to $14M in 2002. Cara also played key roles in major endowment and capital campaigns. At the James, Cara created and administered the James Financial Ambassadors Program, which seeks to educate financial and legal professionals about the benefits of charitable planned giving. In addition, Cara was responsible for the generation of significant resources for both the James and University through her successful solicitation and stewardship of hundreds of major and planned gift donors at the six- and seven-figure gift levels.

“Jenny and Cara are both tremendous additions to the CODSS Board,” said CODSS President & CEO, Lito Ramirez.

“Jenny’s expertise in strategic communications and media relations will be invaluable in publicly leveraging our initiatives and on-going successes, and Cara’s addition brings strong strategic vision and leadership to our donor development programs,” said Ramirez.

“We are excited to have them join our efforts forward the research and legislative causes of individuals and families living with Down syndrome.”

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Ribbon Cutting Ceremony for New Service Coordinators Building

April 30th, 2010

CODSS President, Lito Ramirez (second from right), and CODSS Legislative Lobbyist, Dean Fadel (far left), at the ribbon cutting ceremony for the Franklin County Board of Developmental Disabilities new service coordinators building.

NDSS Invites CODSS to Join National Governmental Affairs Committee

April 13th, 2010

Last  week, NDSS vice president for public policy and director of the national policy center, Madeleine Will, formerly invited CODSS to join its National Governmental Affairs Committee (NGAC), which is a national body of advocates that advises the NDSS National Policy Center on federal legislation and policy activities.  A major responsibility of the NGAC is assisting with the ongoing update of the NDSS National Policy Center’s legislative agenda.

In a letter to CODSS president & CEO, Lito Ramirez, Will wrote: “Because of your exemplary advocacy for the Down syndrome community through your assistance with the Trisomy 21 Act, I hope you can join us.”

CODSS is credited as the only local Down syndrome group in the country to have its own state/federal legislative lobbyist. In February, NDSS requested CODSS’ help in securing the support and agreement of Ohio U.S. Senator Sherrod Brown to co-sponsor the Trisomy 21 Translational Research Parity Act that was recently introduced in Congress.  The Bill seeks to increase federal funding for Down syndrome research.

CODSS is nationally credited as the only local Down syndrome group in the country to have its own state/federal legislative lobbyist. Just recently, the National Down Syndrome Society applauded CODSS for its direct role in securing the support and agreement of Ohio U.S. Senator Sherrod Brown to co-sponsor the Trisomy 21 Translational Research Parity Act that was just introduced in Congress.  The Bill seeks to increase federal funding for Down syndrome research.

We look forward to working with NDSS and other like-minded Ds organizations from around the country to craft an effective national legislative strategy and agenda that will provide greater opportunities to individuals and families living with Ds so they may lead meaningful and more independent lives.

Federal Audit Slams Ohio Special Needs Programs

April 12th, 2010

A federal audit of special education programs in Ohio shows some school districts were blatantly violating the law and failing to properly educate students with disabilities. The deficiencies were attributed to weak state oversight.

Among problems: 1) One district was segregating all middle school students with disabilities in separate classrooms away from peers; 2) One district allowed teachers to limit the number of students with disabilities admitted to their classrooms; and 3) the state lacks procedures to adequately track special-education spending, and doesn’t seek to ensure that eligible kids with disabilities are included in regular-education classes.

Read the complete story from the Columbus Dispatch here.