On His Own Terms

Ricardo ThorntonRicardo Thornton always had big hopes and dreams. But as is too often the case with people with intellectual and developmental disabilities (I/DD), they seemed almost impossible to achieve. Fourteen years of Ricardo’s childhood was spent in the confines of Forest Haven in Laurel, Maryland. Forest Haven (closed in 1991) was the District of Columbia’s public institution for children and adults with a variety of mental, intellectual, and developmental disabilities that had a dark history of abuse of residents and below standard conditions. His sister and brother were also residents and, sadly, his sister died there, never experiencing a full life outside of the institution.

Ricardo was determined that his life would have a different outcome, but leaving the institution was just the beginning of his struggle. Ricardo took his first step by landing a job at the Martin Luther King Library, where he has worked for more than 35 years. Donna, a friend and fellow former resident of Forest Haven, got a job nearby at Walter Reed Medical Center. Donna soon got her own apartment and Ricardo’s weekly visits to her blossomed into romance.

For most, this would not be extraordinary, but at that time people with I/DD were rarely encouraged to live independently and certainly not to get married. Unlike The Arc, most developmental disabilities agencies, caregivers and even family members did not believe that people with I/DD could be employed, let alone live independently. Fewer still believed that they could have mature, intimate relationships.

Ricardo & Donna's weddingRicardo and Donna forged the way, but the journey wasn’t easy. While other couples only need to fill out basic information for a marriage license, Ricardo and Donna were told that it was illegal for people with I/DD to get married in D.C.! With support from The Arc of D.C. and other disability rights organizations, and through the couple’s own sheer determination, Ricardo and Donna eventually realized their dream of being together.

Life progressed, and like many newlyweds they wrestled with the question of parenthood, something their friends and medical personnel advised against. But, eventually they had a baby boy, who is now a successful 25-year-old with a wife and daughter of his own.

Now, Ricardo is one of The Arc’s most well-known self-advocates – living life on his own terms and inspiring others with I/DD. He shares his life story with audiences across the country, pointing out that making his hopes and dreams a reality required determination and the right amount of help, guidance and resources. His inspirational story has even been made into a movie called Profoundly Normal.

“I’ve seen people with severe disabilities who have grown and accomplished great things given the right support,” he testified before the U.S. Senate’s Committee on Health, Education, Labor, and Pensions (HELP).

The Arc is proud to have been able to help Ricardo achieve his goals for more than 30 years. The Arc supports individuals with I/DD in communities nationwide through a national network of chapters. In many cases, what people like Ricardo hope and dream for is what we often take for granted – from securing a job and getting married to having a child and living in the community of their choice on their own terms. We continue to advocate on behalf of the thousands of people with I/DD who are still living in state run institutions. With the tireless efforts of The Arc of Alabama, Alabama became the first state in the southeast to no longer operate large public institutions, and in December 2014, Illinois will have closed 4 out of the 5 of its state run institutions.

Your support allows The Arc to continue its important work.  You can help people like Ricardo and Donna live life on their own terms with your donation today.

The Arc Urges the Senate to Act on the Convention on the Rights of Persons with Disabilities

CRPDIn advance of the U.S. Senate Foreign Relations Committee’s hearing today on the United Nations Convention on the Rights of Persons with Disabilities (CRPD), The Arc is urging the Senate to support this treaty because it is the right thing to do for American citizens with disabilities who travel abroad and for the millions of people around the world that currently don’t have the rights that we enjoy through our long history of disability rights advocacy.

“This treaty is modeled after The Americans with Disabilities Act, which affirms the rights of American citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities. The Senate’s failure to pass the Convention on the Rights of Persons with Disabilities last year marked a sad day for individuals with disabilities across the globe and an embarrassing moment for our nation.

“Today’s hearing is an opportunity for us to fix the wrongs of last year and join more than a hundred other nations, millions of disability advocates, family members, and self-advocates in supporting the human rights for individuals with disabilities internationally. We will be following this process closely, and hope to see the Senate move forward with the CRPD,” said Peter Berns, CEO of The Arc.

Over the last year, The Arc has been working with numerous disability, Veteran’s, and civil rights advocacy groups to garner support for ratifying the treaty, which will promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities. For months, The Arc’s Public Policy team and grassroots advocates across the country have been working to promote the CRPD and ensure ratification.  Currently more than 650 local, state and national disability and allied groups support the treaty.

The United States signed the CRPD on July 30, 2009, joining the 141 other signing nations.  As of October 2013, the Convention had 138 ratifications and 158 signatories.  On May 17, 2012, following almost three years of thorough review, the Obama Administration submitted its treaty package to the U.S. Senate for its advice and consent for ratification.  On December 4, 2012, the United States Senate considered the ratification of the CRPD but fell 5 votes short of the 66 needed – two-thirds of Senators who voted.

All Aboard an Opportunity to Make America’s Railways More Accessible

Amtrak Train

Photo by Drew Jacksich

On the brink of the 23rd anniversary of the Americans with Disabilities Act (ADA), we celebrate the work of advocates like you who have made progress in your communities on so many issues. While train stations and platforms are more accessible, there is still a lot of work to be done.  The problem isn’t your enthusiasm, or tenacity, or will – the problem is Amtrak and our antiquated rail system.  Amtrak was given 20 years to comply with ADA regulations, and they have yet to reach their promise of reaching full accessibility standards.  So The National Disability Rights Network and the nationwide network of Protection and Advocacy agencies for people with disabilities is going to be holding a week of action on Amtrak, and we need your help!

As we approach this historic anniversary of the Americans with Disabilities Act, many Protection and Advocacy agencies and other advocates for people with disabilities will be visiting Amtrak and commuter rail stations across the country to record and report as many accessibility problems as we can.  We need you to start to help us during the week of July 21-27, the week of the 23rd anniversary of the ADA.  Please take some time during this week to visit a local train station.  While there, please take pictures, and fill out the survey to help NDRN determine whether the train station is accessible to people with disabilities. All findings can then be emailed to: trainweek@ndrn.org.

Equal Access to Relationships and Sex for People with Intellectual and Developmental Disabilities…It’s About Time

A recent story in The Journal (Martinsburg, WV) about the debate over whether people with disabilities should legally be able to use sex surrogates touches on a very real yet often ignored issue within the disability community: rights regarding sexuality.  People with disabilities are often seen as asexual and not supported to fully enjoy and express their sexuality at the same level as those without disabilities.

Here in the U.S., we struggle with fully understanding and accepting sexuality, especially if we are talking about our own children. And this is true whether or not our children have disabilities, but can complicate the situation much more for parents of children (including adult children) with disabilities. This international debate draws attention to a very real problem – sexuality typically is not considered a valid need that demands focused attention. And yet, who can measure the actual effects this inattention has on the disability community at large?  For example, who knows what “behavioral issues” and other problems could be averted if sexual needs of people with disabilities were, at the very least, being acknowledged? What if their God-given relational and sexual needs were actually supported and even celebrated?

All moral arguments aside, have we considered every possible option to this dilemma and actively supported people with disabilities to pursue their own sexual fulfillment?  Consider this: How likely is it that people with disabilities, especially intellectual disabilities, have access to consistent, effective education on ways to understand their own sexual feelings and act on those in safe and healthy ways? Are they being taught how to build safe and healthy relationships and then given opportunities to do so? Do they have enough opportunities to meet that special someone who could become a future spouse, boyfriend or girlfriend? Another consideration is the disproportionate amount of sexual trauma that people with disabilities face on any given day. The rate of sexual violence is twice that experienced  by people without disabilities, and those with cognitive disabilities face the greatest risk of all. Is adequate counseling provided to victims so they are able to move forward confidently and securely in their own sexuality? What is the true effect of so much sexual violence within the minds, hearts and bodies of people with I/DDs?

Whether parent or professional, we all have an important role to play in supporting people with intellectual and developmental disabilities to achieve their own relationship bliss (or at least try to as this can be elusive for many of us with or without disabilities), and that may or may not include sexual activity. By providing equal access to this basic human right, and refusing to treat people with fully functioning hearts and sex drives as if they were still children, or in some way asexual, a door is open to explore the full range of what it means to be human, including within the realm of sexuality. For ideas and resources on how to support this cause, visit Autism NOW’s web site: http://autismnow.org/articles/resources-for-learning-about-sexuality/

Read The Arc’s position on sexuality.

‘I wanted to make a difference in the community’

William MonaghanBy William Monaghan, Guest Blogger

In celebration of Developmental Disabilities Awareness Month, The Arc is encouraging individuals with intellectual and developmental disabilities (I/DD) to “Empower Yourself, Empower Someone Else.”  Today, The Arc offers you an article from William Monaghan, the President of the Delaware chapter of People First and an individual with I/DD. Read on to find out more about William’s life and the steps he has taken to be his own best advocate.

This column first appeared in the Spring 2013 issue of Apostrophe Magazine to which Mr. Monaghan is a contributor. Apostrophe Magazine is a publication created for, about and by people with intellectual and developmental disabilities. You can subscribe to Apostrophe Magazine to read more interesting perspectives from people with I/DD as well as columns from The Arc’s national office covering a variety of issues.  And you can find out more information about how The Arc helps support people with I/DD who are interested in self-advocacy on our website.

I am the president of Delaware People First in Wilmington. I was born in Wilmington and have lived here most of my adult life. A good thing about Delaware is that it’s near big cities like Philadelphia, New York, Washington, D.C. and Baltimore.

My mother and father were wonderful role models and gave me the opportunity to expand my horizons by sending me to the Riverview School in Cape Cod, Mass., where I was taught many skills that I feel helped me in my success in my adult years. I graduated from Riverview in 1974 and then attended Brandywine High School and McKean High School in Wilmington.

My mother and father were instrumental in helping me to achieve my goals. My mother’s name is T.J., and my father’s name was William Monaghan Sr. My father is deceased. I also have a sister, Andrea, and they all live in South Carolina. My wife, Barb, and I visit them when we have vacation and on holidays, and we also talk to them on the telephone.

I work for the Dupont Co. in Wilmington and have been employed there for 35 years, which I am extremely proud of. The job has taught me many things, including how to communicate with people and how to manage my time. I work in the clerical/printing department, and I really love my job. I do a lot of different things in my job, which keeps it interesting and challenging.

I joined Delaware People First in 2003, and from the very beginning, I wanted to become an officer. I felt like I could do a good job being a leader and guiding the group. I also wanted to make a difference in the community and was interested in self-advocacy and self-determination. There are 40-50 members in Delaware People First, and we also have a group in downstate Delaware with about 10 members. We meet once a month and have discussions about issues that affect the group, and we bring in guest speakers to talk about issues such as employment, transportation, self advocacy, emergency preparedness (Gary Mears from the University of Delaware has been working with us) and many other topics. We also have gone on many trips to New York, Washington, D.C. and Baltimore, and trips to the Delaware beaches. Delaware People First has allowed me to make new friendships, to help other people with disabilities speak up for themselves and to become stronger advocates. It has also helped me with public speaking where I feel comfortable talking in front of groups and other people. Delaware People First treats people like adults as we should be treated. That is my favorite thing about the group.

The advisers for Delaware People First are Debbie A. Nock, who has been an adviser for 16 years (an “old-timer” in her words) and Susannah Eaton Ryan, who has been an adviser for seven months. The important issues we are working on now include emergency preparedness, self-advocacy and self-determination. We are also planning a statewide advocacy conference in March 2013. We are working with many other groups in Delaware to prepare for the conference and hope to have more than 100 people participate. Delaware People First has many fund-raisers each year. We raise money by having fashion shows, hotdog and bake sales, car washes, selling tickets for Friends Helping Friends Day at Boscov Department Store, gift wrapping at Christmas for family and friends and participating in restaurant fund-raisers such as Friendly’s, Chick fil-A and many others.

My favorite things to do are going out with friends, going out to dinner, taking trips, bowling, playing golf, Special Olympics and spending time with my beautiful wife, Barb. My favorite TV show is “Two and a Half Men,” and my favorite food is Salisbury steak and mashed potatoes (I also have a few others of course).

My best qualities are being outgoing, friendly, courteous, trustworthy, loyal, cheerful and dedicated to people and causes. As other people have stated, I am a Boy Scout.

Ask a Simple Question

As part of a month-long campaign to make some noise during Developmental Disabilities Awareness Month, The Arc posed an open-ended question to our Facebook audience of just over 9,000 people. We asked them what they would like people to be more aware of when it comes to intellectual and developmental disabilities (I/DD).

As of this writing, just a few hours after posing the question, several dozen of our friends chimed in, offering their answers, liking and commenting on other answers and sharing, sharing and more sharing. What is interesting is that almost every single answer touched on a unique concern or issue.

A challenge The Arc faces in its role as the national organization for people with intellectual and developmental disabilities is attempting to serve and advocate for a group of individuals who may have one or more of over 100 different diagnoses which fall under the umbrella of I/DD at any stage in their lives. This naturally means that we have to work on issues ranging from early intervention and early childhood education, to transition from school to adult life, to inclusion in the community all the way to the most sensitive end-of-life issues.

One just has to glance at the responses to this question to see the scope of this challenge. Men, women and teens are posting about employment issues, under-diagnosed and under-represented conditions, respectful language, Individualized Education Programs (IEPs), the adult service system and what happens after high school, and parents with I/DD raising their children.

But the first step to addressing those challenges is raising awareness. If the responses to our question on Facebook are any indication of the types of conversations that are happening across the country during Developmental Disabilities Awareness Month, then we are well on our way. If you are interested in joining this small army of advocates to raise awareness of what it takes to promote and protect the rights of people with I/DD to live, learn, work and play as participating members of their communities, check us out on Facebook and Twitter, find out more about the issues on our website and learn how you can support the work of The Arc.

Empower Yourself. Empower Someone Else. #DDAware!

Empower Yourself, Empower Someone Else

Support the Movement for People with I/DDTwenty-six years ago we successfully advocated for March to be declared National Developmental Disabilities Awareness Month. And, there is no doubt that we have made tremendous strides to promote and protect the rights of people with I/DD to live, learn, work and play as valued and contributing members of their communities, the real strength of our message comes straight from the individuals we serve. No matter how effective our organization’s advocacy efforts may be, no one is as powerful an advocate for people with I/DD as a person with I/DD.

So, this year during March, The Arc would like to empower all individuals with I/DD to appoint themselves as their own advocates. As a self-advocate, you can help take the movement for people with I/DD to others in your community. It can start with a simple question. This March, ask everyone you meet: “Did you know that March is Developmental Disabilities Awareness Month?” That may spark a conversation – a teachable moment – when you can share your experience living with a disability with someone else.

All month, we’ll be working to raise awareness about the issues important to people with I/DD. As a self-advocate, you can help us “turn up the volume.”  Take this opportunity to empower yourself and empower someone else with some of these simple suggestions:

Follow the conversation on Facebook (facebook.com/thearcus), Twitter (@thearcus) and here on our blog and be sure to chime in when you have something to say using the hashtag #DDAware.

Hopes and Dreams

This time of year many people are making plans for the future, figuring out what needs to be done in the next year to accomplish their goals and work toward their dreams. The Arc and www.selfadvocacyonline.org, a project of the Research and Training Center on Community Living at The University of Minnesota, had the opportunity to ask several individuals with intellectual and developmental disabilities (I/DD) to share their hopes and dreams for the future with us.

Help People Like Quincy

It is The Arc’s goal to help these individuals achieve their goals. We do that directly through the services provided by our national network of chapters and through projects such as HealthMeet™ and Autism NOW. And we work indirectly, advocating for the full inclusion of people with I/DD in society and making sure the appropriate supports are in place to allow that. But we can’t do any of those things without you. Find out how you can help real people with I/DD like Quincy, Adonis, Wendy, Joe, Amy, Jill, Ciara, David, Miki, and Sarah turn their dreams into reality through a donation to The Arc. Achieve with us!

Quincy Mwiya

Quincy: To settle down and have a wife and children

Adonis: “I’m working on completing my MBA. When you have a disability it doesn’t mean you can’t do the same things other people can, but you have limitations….you may have to work a little slower, you may have to do things a little different. My focus is to make sure that the person who is seeking an independent lifestyle has everything that they need, not only on a personal level but on a social level as well. People don’t want to come out of institutions and just turn around and go into a little apartment that becomes their whole life. No, they want a fully inclusive life, and that’s what I’m preaching. You can’t judge a book by its cover. Just looking at a person from the viewpoint of their disability does not tell you what that person is capable of achieving.”

Wendy: “Honestly, what I’d really love to do right now is to be a full time self-advocate and work on these issues (related to I/DD)…organize other self-advocates. I love politics. To do stuff with grassroots organizing, I think that would be the most fun job in the world.

Joe: One of my biggest dreams to date is to get healthy again (after a stroke) and try to take care of myself and when I go out into my community, practice what I preach. We learn from each other how to be better people.

Amy: “So far I’ve met my dreams of getting a job and being self-sufficient and independent. My next one is to own my own home. I should be able to do that in the next year or so. I have always had that dream of the white picket fence and a little house and a garden and I’d like to make that come true. I don’t need anything huge, just enough for one or two people. And something so you can feel like you’re independent and feel like everybody else.”

Jill: “My dreams are to think big and to say that people with I/DD have a lot to offer.”

Ciara: “One of my dreams is coming true – I’m getting married next year. One of my goals in the next few years will be thinking about having a family. So, I’ve got quite a few.”

David: My dreams and goals are to go as far as I can. My goal is to be around, maybe not always be a leader, but ensure that things happen for people with intellectual disabilities. I suppose ensuring that people with intellectual disabilities are treated the same as other people. Ideally I’d love to see them have more power.”

Miki: “My dream is to get married and to have children.”

Sarah: I have so many hopes and dreams. If I had to pick one, probably it would be to go back to college. I have taken classes one at a time. So far I have 15 credits. It’s hard for people with disabilities to go to college, it’s another reason why I advocate. If I get a degree, it would probably be in media or in – something I have learned recently – advocacy.

NOTE: The Research and Training Center on Community Living at The University of Minnesota | SAO is developed in part through past support by the Nec Foundation and by The MacArthur Foundation. The Research and Training Center on Community Living (RTC) operates with primary funding from the National Institute on Disability and Rehabilitation Research (NIDRR). It also receives funding from the Administration on Developmental Disabilities (ADD) and other federal agencies. The RTC is part of the Institute on Community Integration (ICI), in the College of Education and Human Development at the University of Minnesota.

Is Justice For All…Even for Victims with Intellectual Disabilities?

Victims of crime who have intellectual and developmental disabilities face significant barriers when accessing the justice system. This became starkly evident in a recent case from Connecticut. Richard Fourtin was convicted of sexually assaulting a twenty-five year old woman with significant intellectual and physical disabilities including cerebral palsy and hydrocephalus. In the case of Fourtin v. Connecticut, the Connecticut Supreme Court overturned the conviction earlier this month, finding that the woman could have used “gestures, biting, kicking and screaming” to indicate her lack of consent to sexual intercourse. In response, The Arc of Connecticut signed onto an amicus curiae brief with other disability agencies and they are working toward revising state laws regarding victims with disabilities.

This case ignited fury among disability and victim advocates alike because the prosecution seemed to place blame on the victim for not doing what she either was incapable of doing (many victims freeze when they are being assaulted and are not sure how to respond or wonder if doing so could result in personal injury) or perhaps didn’t realize she had a choice to do. She may not have realized the actions against her were criminal. People with disabilities often don’t understand or appreciate what is happening to them when a sexual assault occurs, especially when they haven’t been taught what acts are considered a crime. Most people with disabilities experience violence more than once throughout their lives, and if they are living in a pattern of abuse, it is especially hard for them to recognize the criminal nature of an offender’s behavior.

Ongoing education to prevent sexual violence must be a priority in our advocacy communities due to the sheer number of people this problem affects, and the resulting untold, devastating consequences it has on so many lives. We must also concentrate on educating lawmakers, law enforcement and the courts about issues of victimization of people with I/DD. Consider this data from the National Crime Victim Survey (revised):

  • In 2010, the victimization rate for people with disabilities was almost twice the rate among  people without disabilities.
  • Serious violence (including rape and sexual assault) accounted for about 50% of violent acts against people with disabilities.
  • People with cognitive disabilities (which includes intellectual and developmental disabilities) experienced the highest rate of violent victimization.

October is National Crime Prevention Month, it’s a great time for chapters of The Arc and other advocates to support crime victims with intellectual disabilities.. Reaching out to local victim assistance agencies and offering education and support in their effort to help crime victims with disabilities is a great first step. Consider partnering together in a media campaign about preventing the victimization of people with disabilities. Support self-advocates who are beginning to speak up for themselves against violence in their lives by helping them develop brief presentations about this topic that they can take to the community (schools, police departments, rape crisis centers). And, let’s band together to be sure our support of people with I/DD extends to making sure crime victims are not victimized again by the criminal justice system. Find out more about victimization and criminal justice issues on The Arc’s website.

Do You Know What’s At Stake in this Election?

Door with Vote Here SignNow that you are registered to vote, do you know what’s at stake on November 6th? So many issues facing people with intellectual and developmental disabilities (I/DD) are being debated at the local, state and federal level – you just need to tune in to learn.

Take the Presidential race – did you watch last week’s debate in Denver, Colorado on television? Both candidates talked about their views on Medicaid – the lifeline for people with I/DD. And the Affordable Care Act, the new health care law that will bring about comprehensive reforms that will benefit Americans with disabilities by prohibiting discrimination based on health status and improving access to care, was hotly debated. If you missed it, you have two more chances to hear from President Obama and Governor Romney (and their running mates have a debate scheduled too).

In late September, the campaigns sent representatives to speak on their behalf at the National Forum on Disability Issues in Columbus, Ohio. This was the only chance both campaigns had to talk about disability-specific issues in the context of what they would do as President. If you missed watching it live online, you can go to the Forum’s website to watch it and find other materials.

You can also educate yourself by going to the candidate’s websites:

Now is your last chance to get educated before you cast your ballot in this election – get the facts!