We’ve got Soul Food fever and here’s why!

by Jackie Orihill

Easter Seals has partnered with a very cool t-shirt company named Soul Food Mafia, and they are about a whole lot more than just t-shirts. Our guest blogger today is the founder of Soul food Mafia, Heidi Davis, and she answers some questions for us.

What’s Soul Food Mafia all about? It’s not about me, my team, or even a t-shirt really. We always say this is a universal calling. It’s our job to inspire a generation to do more and be more. Our karmic calling, so to speak. We just happen to do it through the creation of a really awesome T-shirt collection.

What inspired it? My 15 year-old daughter. I saw this generation of millennials that everyone says is too self-absorbed to care about philanthropy. I don’t believe that. I believe they want, no need, a movement. A reason bigger than themselves. We need to take them from selfie to selfless. Social media has taken over the world. That is where we have to go to inspire them. We inspire with badass t-shirts that are Instagram worthy.

Why is the number 8 special to you, and where can we spot it? Everywhere. On the website, our launch date, the number of philanthropic partners we have. Eight is the universal sign of karma. I am a firm believer in karma. (Laughing) Some days karma is all a girl has to hold on to. Hey, I might have to put that on a t-shirt.

What’s your connection to Easter Seals? Easter Seals and its efforts have touched my family in a multitude of ways. My Uncle Paul has MS and has been in a wheelchair since he was about 18 years old. He is fiercely independent and insists on doing just about everything himself. That would not be possible without organizations like Easter Seals. Your advocacy allows him to have the advantages that most of us don’t have to think about. (smiling) He’s a really cool dude.

What’s your advice for taking your passion and doing good with it? You first have to know what your passion platform is. Is it children with disabilities? Animal Protection? Human Rights? Pick one, pick two, heck, pick 8, but pick something. Even the smallest effort counts. One sandwich feeds a hungry person. So many people don’t get involved because they think what they have to offer isn’t enough. Every single thing you do for good counts. It counts.

How can the Easter Seals audience get involved? Visit our website. Soul Food Mafia has eight t-shirt designs that I created. They are really cool, and they are all manufactured in a sweatshop free, child labor free facilities. Pick your favorite. At the point of checkout click on Easter Seals as your philanthropic platform of choice. This ensures your donation goes directly back to Easter Seals. Join the movement.

Why is giving back important to you? My father is one of my favorite humans on the planet. He taught me that you should always give more than you take and that there are no limits on love. I try to teach those same lessons to my children. It’s all about Karma. They say what we put out into the world comes back to us three fold. I’m pretty sure it comes back eight.

Check out the Soul Food Mafia Lookbook video.

To purchase a Soul Food Mafia T-shirt and support Easter Seals, visit www.soulfoodmafia.com

Turn your passion into volunteer experiences

by Sara Croft

There is no cookie cutter way to give back, and we love to see people use their passions and creativity for good, whether at Easter Seals or any nonprofit that touches you. Many people reach out to organizations like Easter Seals to see what they need, but you are empowered to give us, or any nonprofit organization, a call and offer your ideas for donation of your time or unique skills.

In fact, we once had someone with a certification in gardening offer to teach seniors in an adult daycare program how to garden. For years now, they’ve collaborated on seasonal projects and everyone — the volunteer and students alike — feels excited for, and stimulated by, each new project. As we gear up for a partnership with the company Outerwall to inspire volunteerism, we thought it would be a great time to offer a bit of inspiration with volunteerism ideas. Sara Croft is here to offer some of the unique ideas from Easter Seals Crossroads in Indiana. Take it away, Sara!

Volunteer clean-up

Here at Easter Seals Crossroads, we’ve welcomed skills-based volunteers with open arms the past year. Here are a few examples of the sorts of people, skills and talents we’ve found useful:

Artsy people: Cayla is an art student at Heron High School in Indianapolis. She enjoys art and has brought that passion to our Adult Day program, which recently created an art therapy initiative. Cayla introduced the participants to a variety of painting mediums while they collaborated on a large canvas piece. She said “It was my first time volunteering and I was nervous but I had a great time and I will volunteer with the Adult Day Program again!”

Business people: Kate Stephens of That’s Good HR conducted mock interviews with consumers in our employment division to assist them with building interview skills. The local Indianapolis company specializes in recruitment and hiring and offered their expertise to our job coaches and consumers for a few hours during the weekday. Kate says “We loved our time at Easter Seals Crossroads! It is such a special place serving a wonderful cause!”

Social people: CampAbility, one of our summer day-camps, is great for anyone interested in Occupation, Physical, or Speech-Language therapy. All of the activities during camp have been developed by our therapists, and volunteers are responsible for assisting staff with activities that explore sensory/motor experiences, expand communication skills, and enhance social skills.

Outdoor people: Our Therapy and Wellness Garden is one of the highlights of our facility. The large fenced-in area is used by our Adult Day consumers year-round for growing vegetables and for outdoor activities. Keeping up on the maintenance for such a large outdoor area can be difficult. Volunteers keep the space beautiful by providing much needed mulching, weeding, trimming and general clean up. Local gardeners and landscaping companies have offered this assistance along with corporations who want a volunteer experience with their staff outside of the building.

Easter Seals Crossroads is thankful for the 700 volunteers that devoted their time to us during our last fiscal year along with the 9,182 volunteer hours that were served, and every Easter Seals is so grateful for any way you’d like to support us. Join us!

Your local Easter Seals affiliate is looking for volunteers with your skills and talents, too — any type of volunteering, whether it’s skills-based or a general opportunity, can give you the chance to improve on the skills and experiences you already have or to develop and practice new ones. One thing I hear from nearly every Easter Seals volunteer I talk to is that volunteering is as beneficial for them as it is for the affiliate they volunteer for.

A doctor’s opinion of developmental screenings for all children

by Jackie Orihill

Kevin P. Marks M.D., F.A.A.P. is a general pediatrician at PeaceHealth Medical Group in Eugene, Oregon, and he has some interesting points about why all children may benefit from social and emotional developmental screenings. Take it away, Kevin!

More than ever before, U.S. healthcare providers are promoting early literacy and language skills for children zero to five years of age. We preach “the 4 Ts”:

Talk, talk, talk.
Take turns taking.
Tune into what your child is doing and saying.
Turn off your TV and cell phone!

National campaigns like Too Small To Fail emphasize “Talking is Teaching: Talk, Read, Sing”—aspiring to close the word gap between low-income and affluent children.

My professional opinion is that public awareness campaigns promoting early language and literacy skills would be more effective if they were paired with a campaign about the need to screen children for developmental-behavioral problems. Although their recommendations are a bit complicated, the American Academy of Pediatrics (AAP) recommends universally screening young children for developmental delays, social-emotional/behavioral problems, autism and psychosocial risk conditions like maternal depression/anxiety. Parents need to know—screening is the new standard of care.

Interestingly, screening rates have approximately doubled over the past fifteen years. According to AAP surveys, 23% of pediatricians “self-reported always/almost always using 1 or more standardized screening tools” in 2002 and 48% used them in 2009. Nowadays, states like Oregon even have quality incentives that hold healthcare providers accountable for universally screening children.

So what is screening supposed to look like at a doctor’s office? If you’re the parent of a young child, does the process in this video about the Ages and Stages Questionnaire look vaguely familiar? Hopefully, your answer is yes. [Note that Easter Seals offers an ASQ screening online for free, and you can take your results to your pediatrician.]

Here’s why: 15-17% of U.S. children have a developmental disability and about 20% have a mental health disorder at any given time. Estimated prevalence rates are similar in 2- to 5-year-old children. By 16 years, 37-39% will have been diagnosed with a mental health disorder. Unfortunately, pediatrician impression alone (without screening) fails to timely identify and refer 60–80% of children with developmental delays.

Furthermore, children exposed to multiple adverse childhood experiences disproportionately require special education, drop out of school, get addicted to substances of abuse, and have suicidal ideation or attempts. They inordinately burden our judicial and penal systems with anti-social/criminal behavior and our healthcare system with mental illness, obesity and many other chronic ailments. Early intervention (EI) saves the brains of children with adverse childhood experiences and those with emerging disorders, like autism. For every dollar spent on high-quality early learning programs, there’s a 7-10 percent annual return rate in cost savings—and the younger the child served, the wiser the investment.

Beyond healthcare settings, the federal government wants screening to also occur in daycares, preschools, homeless shelters and at nurse home visits. “Birth to Five: Watch Me Thrive!” is a wide-scale, coordinated initiative to universally screen children at-risk for developmental-behavioral problems. Unfortunately, the average American parent knows little to nothing about their resources for families.

Every parent looks forward to seeing their child’s first smile, step, and words. Regular developmental-behavioral screenings help raise awareness of a child’s development, make it easier to celebrate milestones and identify red-flag concerns as early as possible. With early and periodic screening, parents can make sure that their children get the support they need to succeed in school and thrive alongside their peers.

“Do more talking and reading” is generally great advice but if parents have developmental, behavioral or learning concerns, be wary if a healthcare provider quips, “let’s just wait and see if he grows out of it” without first interpreting a screening tool. When clinicians notice “red-flags” or there is an atypical screening result, the new mantra is “let’s play it safe and give them a call”—“them” being an EI agency and/or other community resource.

Unfortunately, many referred children/families never receive high-quality services in a timely manner. Parents might have negative perceptions about referrals. They can seem like an externally imposed value system. At times, a healthcare provider’s recommendations can seem unhelpful or formulaic. The office staff might appear judgmental, intrusive, or overbearing. Many “lost-to-follow up” children/families are overwhelmed by life stressors like poverty, marital discord, domestic violence, mental illness, a language barrier, a disconnected phone service or recent move, etc.

At-risk/disadvantaged children are frequently overlooked if their state has strict EI eligibility criteria or lacks system-wide care coordination. Among states with narrow eligibility criteria, poor children are 18% less likely to receive EI services. Others live in a community where an early detection system struggles to address parental language or literacy barriers. Disparities exist in screening/referral support for Latino populations which negatively affects children’s involvement in EI. African American children with developmental delay(s) are 5 times less likely than were white children to receive EI services. All not good.

Alas, the new message for parents should be: “Talk, Read, Sing, Screen!” If your healthcare provider or high-quality screening tool indicates there’s an emerging problem, don’t wait. Get your child swiftly linked to an EI program and/or other beneficial program. Let’s expect 100% of healthcare providers to routinely use high-quality screening tools. Let’s tell policy makers to improve our care coordination systems to enhance the long-term success of our children.

Visit makethefirstfivecount.org to learn more about screening your child.

Does technology destroy or enhance communication?

by Beth Finke

It’s the first week of August already, and the first day of school isn’t far away. How about we start the month with a guest post by a friend of mine who is a writer and a teacher?

Carolyn Alessio’s work has appeared in The Chicago Tribune, The Pushcart Prize Anthology, and Brain, Child. Her novel manuscript was a finalist for the PEN/Bellwether Prize for socially engaged fiction. Carolyn teaches at Cristo Rey Jesuit High School in Chicago and tells me this is a story she often shares with her students.

by Carolyn Alessio

The Alessio family

The couple in their 50s or 60s sat down at the table in front of me, whipped out their phones and began to text like teenagers just released from a museum tour.

Glancing up over my computer at the Pilsen coffee shop, I feared I was witnessing the end of interpersonal communication. This was almost 10 years ago, so the phones were flip models (or “dumb”) and the owners likely weren’t tracking progress of NASA’s latest Mars Rover or pulling up the results of recent blood work. But they texted madly anyway for the next hour, looking up only occasionally to sip their lattes or actually stare into each other’s faces.

All around us, other customers spoke to each other in Spanish and English. Music by Maná, a Mexican pop rock band, floated around us as well with bachata melodies and romantic lyrics. The rich ambience often drew me to the coffee shop. But it
all seemed lost on the two at the table in front of me, who might as well have been wearing headphones or sitting in different cities.

Pausing over a knotty section of my novel, I remember worrying about my high school students and my own small daughter. Would technology destroy their ability to connect personally, to make small talk as well as to look others in the eye and proclaim the truth in their hearts? And if they did, would it be abbreviated in text-shorthand such as ATSITS for “All the stars in the sky?”

Maybe, I thought, I should just start teaching soliloquies in shorter bursts. Macbeth’s bitter, rueful monologue after the suicide of his wife might be boiled down to begin “2MOR & 2MOR & 2MOR.”

With technology and others’ use of it, it’s easy to be judgmental. My now-teenage daughter frequently reminds me of this tendency.

That day in Pilsen, the couple in front of me finally stood up and put down their phones. As they went to say goodbye, however, they exchanged no spoken words. Instead, I watched in amazement as they signed expressions I recognized from basic American Sign Language: I love you, Goodbye.

These days I often tell my students about my presumption that the two in the coffee shop WERE merely using technology to disconnect rather than to connect. I am still anxious about the potential of technology to supplant emotion, but I am also aware of its ability to miraculously enhance it.

How the ADA changed my life: I think I got fired because I lost my sight

by Beth Finke

When I finished college I got a job at the Study Abroad Office at a university. During one-on-one appointments with  students, I’d ask what they might like to study overseas, what sort of living arrangements they wanted, did they speak a foreign language, which countries they were particularly interested in — that sort of thing. I’d describe options available to them, make phone calls to other universities. If the university didn’t offer the option they wanted, I’d help with paperwork to get their credits transferred. I liked the work, I was good at it, and soon I was promoted to assistant director.

And then, a few years later in 1986, I lost my sight. My contract was terminated shortly thereafter.

The Americans with Disabilities Act wouldn’t be signed into legislation until four years later. This month is the 25th anniversary of the passage of the ADA, and while I am celebrating all the progress we have made in a relatively short amount of time, I also acknowledge we have a lot more to do. One example: it’s 25 years after the ADA was passed, and the unemployment rate among people who are blind still hovers around 75%.

Here’s my work story: After my contract at the university was terminated, I attended a residential rehabilitation center for the blind, learned Braille and taught myself to use a talking computer. I applied for a job at the Study Abroad Office again after The Americans with Disabilities Act had been passed and made it through the first round of interviews. Even with the law on my side, though, I didn’t get hired.

My husband Mike was the lucky guy who got to read the carefully crafted rejection letter out loud to me. Not a word about disability. The reason I wasn’t hired? My lack of recent work experience.

I applied for all sorts of jobs after that. One was with an emergency hotline that took calls from people whose pets have eaten a toxic substance. I emailed them for details. My note didn’t mention I was blind, or that I used a talking computer to send the email. Their response was enthusiastic. I was invited to visit the office to apply for the job.

A friend drove me to the interview. I heard the receptionist leave her desk abruptly as my friend helped me fill out the printed application form. The woman who walked out next was not the receptionist — she had a different stride from the first, and her bracelets jangled. Forms had to be filled out with every phone call that came in, she said. Every word by every person who calls the hotline had to be documented. By hand.

I explained how I use a talking computer. I could create digital versions of the forms, complete them on the computer, print them out.

“No,” she said. “They’re legal forms. They have to be filled out by hand.” I tried to squeeze out more details, see if maybe there were workarounds. But she wouldn’t listen. That was that.

If you ask me, it was a lawsuit waiting to happen, but even today, 25 years after the ADA was passed, these lawsuits are the burden of the person with the disability. To bring a case against that poison control hotline I would have had to pay a lawyer, file, wait months — sometimes years – hoping the Equal Employment Opportunity Commission would accept my case. I didn’t file a complaint.

When Mike spotted another want ad for that same position in the paper weeks later, I sent another email asking for another interview. No email response.

A carefully worded letter arrived soon afterwards with task descriptions, each one specifically written to make it perfectly clear that a blind person couldn’t possibly perform them. The product of a legal consultation, I was sure.

I got this sort of treatment more times than I care to tell you about. I don’t take it personally anymore, but back then it was painful. And confounding. I guess it’s the same as other bigotries. Changing the law is one thing. Changing hearts and minds is another, and slowly, slowly those hearts and minds did start to change.

As ramps replaced curbs, and theaters and sports facilities added accessible seating, and buses and trains and subway cars ran automatic announcements to call out each and every stop, and handicapped stalls were added to public restrooms, well, a funny thing happened. People with disabilities started eating out at restaurants, enjoying a night out at the movies, cheering on their sports teams at games, traveling on public transportation. People got more used to being around those of us with disabilities, and that familiarity made them more willing to take a chance on hiring us.

A church in Champaign, Illinois, hired me as a volunteer coordinator. When we moved to the Chicago suburbs, a minor league baseball team found a job for me in their ticket office. When we moved to Chicago, Easterseals took me on as their Interactive Community Coordinator. I am grateful to all of these employers for taking a chance on me. Their confidence in me has helped boost my confidence in myself.

I am also thankful to the legislators, demonstrators, advocates and lobbyists who worked so hard to get The Americans with Disabilities Act passed back in 1990. The next frontier? Bringing that unemployment rate down. Let’s keep working.

Get job hunting resources and look for jobs posted by employers who want to hire and retain people with disabilities at easterseals.jobs.

How the ADA changed my life: “there is nothing on earth like being there…”

by Beth Finke

We continue our celebration of the 25th anniversary of the Americans with Disabilities Act this month with a guest post by Mary Rigdon, a writer in one of the memoir writing -classes I lead for senior citizens here in Chicago.

by Mary Rigdon

Basketball stadium map showing accessible seating areas

My life changed drastically when the ADA was passed and I became the compliance officer for the U.S. Attorney’s Office in Detroit. I spent more time out of my cubbyhole office after that, interviewing folks with disabilities who raised complaints, choosing locations to inspect for compliance, and negotiating details of upgraded plans for expanded services for those with disabilities.

Our first real confrontation came with a large hotel at the downtown Renaissance Center. We decided to target that facility as it had hundreds of rooms, was used for multiple conventions, and was in the process of remodeling and updating the buildings. We reasoned that if this hotel agreed to the necessary upgrades, it would stimulate others to get on board with the ADA, too.

A graduate student who used a wheelchair accompanied us to demonstrate the need for rooms with accommodations– wider doors, room numbers lower on the wall with raised numerals and Braille designations, lower sinks in the bathrooms, and showers with no ledges to block entrance. After several months of negotiation we reached a compliance agreement and schedule which we publicized everywhere to pave our way into other venues — more hotels, lots of restaurants and theaters.

I enjoyed attending training sessions at the Department of Justice (DOJ) with people around the country who were dealing with these issues, too. DOJ added an entire new staff in the Civil Rights section to concentrate on the ADA, including one person with sight problems, one with hearing deficits, and feisty Joe, a speed demon in a wheelchair.

Joe was a fanatic wheelchair athlete, having played in a league during college and law school. From this background, he became a primary motivator for making athletic stadiums and sports arenas accessible to those with disabilities, particularly persons with special seating requirements. This was a long and hard-fought battle in many cases, and I cannot forget the excitement in Joe’s voice as he described his thrill in attending his first professional basketball game in person. “I love watching games on TV, but there is nothing on earth like being there at the stadium,” he said. “All that energy, hearing all those fans, seeing the court and watching the players right there — live and in person!”

This determination was the impetus in persuading the Justice Department to press particularly hard for seating accommodations at the principal venues in the 1996 Olympics in Atlanta. It was with great fanfare that Deval Patrick, then the capable Deputy Attorney General for Civil Rights, announced that 1% of the seats (850 of 85,000) in the main stadium would be wheelchair accessible with adequate sight-lines, and that those seats would all be near regular seating for accompanying family and friends. This was an historic first for an Olympic site.

Twenty-five years later I am glad to see the continuing ADA accommodations enacted, and when I see the names of my ADA comrades in the news I rejoice in their continuing dedication to the needs of people with disabilities.

Visit easterseals.com/ada to learn more about this important civil rights legislation.

How the ADA changed my life: view from the post-ADA generation

by Jennifer Dexter

I am so pleased to introduce Beth Roberson to readers of this blog. Beth is an intern at our Easter Seals Office of Public Affairs this summer and is a rising Junior at the University of Arizona. I am lucky enough to have known Beth and her family for many years and I am so happy she has a chance to share the story of how the Americans with Disabilities Act (ADA) affected her family’s life.

Alan and Beth

#ADAGeneration

Post by Beth Roberson

My brother Alan has been missing me since I started interning at Easterseals in Washington DC this summer. Alan has autism, and I’m used to his multiple texts throughout the day. It’s rare to get an “active conversation” going with Alan, though, so a call I got from him at work the other day came as a nice surprise, and a delight. My brother has called me before, but this call impressed me by how well Alan did at asking relevant questions instead of being silly.

Alan was phoning from the Easterseals Blake Foundation van, heading to his job on a local landscaping crew. My brother has come a long way in the world since his diagnosis with autism. Similarly, I have come far in understanding the disability world.

When we were little, my brother used videos to learn to talk, and I used videos to learn ASL. In middle school he struggled with outbursts of learning responsibility while I struggled with having a brother who had autism. In high school Alan attended a work program and started learning to work for a paycheck, and I was in high school when I started my job working as a respite worker for a friend of Alan’s — I help him learn to clean and live on his own. I am also working here at Easterseals, and my brother is happily heading to work every day to make money to buy a new DVD.

I was born 5 years after the Americans with Disabilities Act (ADA) was passed. My generation grew up with curb cuts on the cross walks, buses with lifts, accessible college campuses, and the idea that anyone can achieve their dreams, whether they have disabilities or not.

To be honest, I didn’t know about the Americans with Disabilities Act until after I started working at Easterseals. I assumed growing up that it was the world’s job to support those who needed it. Learning the history and the struggle that led to passage of the ADA 25 years ago was shocking — and inspiring.

I had a chance to go to Haiti for a mission trip my freshman year of college and was able to volunteer at an orphanage alongside adults who had autism, Down syndrome and cerebral palsy. I witnessed firsthand how the culture didn’t accept them, and how they had no opportunities to learn to work in the world. I came back thankful my brother had a job and was working to eventually move out and be independent.

I am grateful America decided to help those with disabilities become successful in the world, and while I know there is still a lot to work for in this world, I am grateful my family has had support from places like Easterseals Blake Foundation to help my brother learn to be independent. For the 20 years I have been alive, ADA has been working.

I can’t wait to see where my brother eventually lives and works in the future.
And I can’t wait to see what supports and changes will happen and whether or not I will be a part of it. I miss my brother while I am here interning in Washington, D.C., but I relish his phone calls and texts, and I can’t wait to see where he will be in the next 25 years.

Learn about autism services for adults.

We all have a role in supporting the ADA and celebrating it

by Randall Rutta, President and CEO

As Easter Seals prepares to celebrate 100 years of serving people with disabilities and their families in 2019, now is a time when we, as an organization, are reflecting on how changes in medicine, societal perceptions, facilities, and technologies have influenced how we have provided supports and services. One of the biggest changes occurred just within the past quarter century with the implementation of the Americans with Disabilities Act (ADA). The ADA literally opened doors for many who, prior to the ADA, thought they would have limited opportunities for employment, higher education, regular medical care, and travel.

In the years leading up to passage of the ADA law on July 26, 1990, Easter Seals often served as mediator and coordinator for discussions between organizations representing people with disabilities and agencies providing public service—in particular transportation operators, healthcare providers, and workforce programs.

Bus lift

Since 1990, Easter Seals has administered several national technical assistance projects and training programs that provide reliable, customer-focused information and education for state and local disability and service agencies. From teaching bus and rail transit employees about serving customers with disabilities to helping veterans understand their rights under the ADA as they return to civilian life, Easter Seals assists communities and individuals with understanding the importance of the ADA and how they can fulfill its purpose by eliminating discrimination against people with disabilities.  Physical access and communication technologies have improved for everyone due in large part to the ADA, but the need for education, understanding, and assistance regarding the law remains. For this reason, Easter Seals continues to provide essential information and training on the basic tenets of the ADA for professionals unfamiliar with the law’s requirements or for agencies who request refresher education on implementing the ADA.

When our interns arrived at Easter Seals this summer, we noted that most of them were born several years after the signing of the ADA. They are the first generation to have grown up not remembering networks of sidewalks that ended only with sharp curbs, heavy doors on college campus buildings that could only be opened manually, or audiovisual programs with no captioning. Their enthusiasm for wanting to make a difference by supporting continued improvements and community understanding for people with physical, sensory, and cognitive disabilities encourages those of us who do remember the struggle for accessibility equality. Through our interns’ enthusiasm, we have seen that the spirit of the ADA is alive and well for this generation who’s entering the workforce in the next few years.

This July and August, as you commute to work, vacation, or enjoy a baseball game, take a moment to look around and notice the things made possible because of the Americans with Disabilities Act and consider what opportunities for improvement still exist in your community, neighborhood, and workplace. All of us have a role in supporting the ADA, and we can also take a moment to celebrate what has been accomplished. So many of the improvements originally designed for people with disabilities are helping all of us more easily connect, travel, and communicate each and every day.

On behalf of Easter Seals, Happy ADA 25th Anniversary to all who provide accessible services, programs, and facilities. Thank you!

Join our Twitter chat on the ADA tomorrow with #ADAToday so we can continue conversation and awareness about disability rights and access.

You can also see current and historical information and stories about the ADA at easterseals.com/ADA.

How the ADA changed my life: America came together and spoke with one voice

by Katy Beh Neas

Katy Neas (right) with Claudia Gordon, the first deaf African-American female attorney in the U.S.

Having never been one of those people who knew exactly what they wanted to do when they grew up, I sometimes have to pinch myself at how lucky I have been to have had the enactment of the Americans with Disabilities Act as the beginning of a very rewarding career.

It all started in 1984 with my summer internship on Capitol Hill with an ambitious Congressman from Iowa’s 5th district: Tom Harkin. Fast forward to 1987, when now Senator Harkin became the head of the Senate Subcommittee on the Handicapped (we later changed the name to the Subcommittee on Disability Policy).

Senator Harkin and Senator Lowell Weicker of Connecticut introduced the first version of the Americans with Disabilities Act (ADA) that year. Over the course of the next 3 years, I met and worked side-by-side with disability advocates inside the beltway and across the country. Our common purpose was to get the American public and the Congress to understand that discrimination on the basis of disability took many forms — myth, stereotype, fear — and that this discrimination was counter to our values as Americans and must be rendered illegal.

The Subcommittee conducted many hearings on the ADA. People with disabilities told their own stories about what they wanted out of life, why barriers must be removed and why we, as a country, could do better.

I still remember one woman who was in her late 50s and had breast cancer. She was a tough New York City stock broker who scheduled her chemo visits so they would not interfere with her job. She was fired because her employer didn’t want someone “sick” in their office. I also remember one younger woman who had intellectual disabilities and had a job. When Senator Harkin asked her what she did with her paycheck, she flashed a huge smile and told him, “I bought this beautiful dress.”

In 1988, I married my magnificent husband, Ralph, who also worked on the ADA. He led the efforts of the national civil rights community through the Leadership Conference on Civil Rights (LCCR) and helped to leverage the power of the race, women’s, religious, labor and other members of LCCR to join in the campaign to enact the ADA with the disability community because disability rights are civil rights.

The story of the ADA is the story of America coming together on many different levels. Disability organizations and advocates tossed aside parochial agendas and advanced the ADA with one voice. Civil rights leaders joined disability rights leaders — their cause was our cause. Democrats and Republicans worked together as parents, siblings, and neighbors of people with disabilities. Congress and the White House together made the ADA the law of the land.

I hope that all of us can take a page from the ADA handbook about the value of working together to advance a common goal. The past 25 years of the ADA prove this approach is good for all.

Learn more about ADA history, and how Easter Seals was involved, at easterseals.com/ADA.

How the ADA changed my life: when discrimination occurs, I have back-up

by Donna Smith

So what does 25 years of having a law to protect my civil rights mean to me? What changes have I noticed? What else needs doing?

I was 31 when Congress decided that my right to equal access to employment, health care, movie theaters, restaurants, public transportation, and telecommunications needed to be affirmed and protected by legislation. By that time, I already had a college degree, had been working for 11 years, was the mother of an 8-year-old child, and had been riding the bus to work for six years.

So the passage of the Americans with Disabilities Act (ADA), while recognizably momentous, was for me less an “aha” moment and more a moment of weary satisfaction. The sense of accomplishment 25 years ago was tempered by the knowledge that the distance between the passage of civil rights legislation and the implementation of nondiscriminatory action was still quite a socio-hike.

Maybe I can describe it this way. I have carried the label of “disability” for 56 years. I think of the history of acceptance of people with disabilities as equal members of society as a long-distance race — one of those really long endurance races that go on for miles and miles.

In the ’60s there weren’t that many people willing to join that race unless personal experience of disability pushed them off the starting blocks, ready or not. The primary focus was more on “helping” people with disabilities.

More participation in the race for equal access came in the ’70s, bolstered by three additional pieces of legislation:

1. the Architectural Barriers Access Act (1968)
2. the Rehabilitation Act (1973), and
3. the Education for All Handicapped Children Act (1975)

For me this meant that when I went to Mississippi State University in 1975, there were a few really exceptional people on staff committed to providing access to the campus and all the programs and services offered there. Don’t get me wrong — I still encountered more than my share of discriminatory behavior while in college, but I wasn’t cut afloat to make my own way.

In the ‘80s my focus was on employment and becoming a mother. I’ve been pretty fortunate in employment and have managed to get and keep work for my entire career, perhaps because I made it difficult for employers to turn me away. Plenty of people associated with my employment expected me to fail, and plenty of people everywhere didn’t understand how I could be a satisfactory parent. All I could do was keep on making my way through the race to prove equality and bring along as many converted people as I could manage while still living my life.

So when the ADA was passed in 1990, there was still a lot to learn and prove. Society had quite a distance to go to achieve an inclusive world for people with disabilities.

Passage of the Americans with Disabilities Act was a resounding starting shot to get runners, reluctant or otherwise, moving along in the right direction. Since July 26, 1990, I’ve had better back-up when discrimination occurs. More people are engaged in discussions of what access means and more actions have been put into place to achieve that access. The ADA provided me a process to talk to employers about what I need to excel at my work, and most employers have responded by providing it. I learned how to assert myself as the primary parent for my daughter with her school and in her health care and recreational activities. Whether or not school personnel and other parents believed me capable, I made sure she had what she needed and proved my success by having a healthy, happy, well-adjusted child.

In the last 15 years, I have noticed that the race course has gotten a little easier. Sure, there are still plenty of people out there resisting the change, and some who are just running in place to look busy, but overall it’s easier to move forward than before.

Since starting my job here in 2002 I have worked for an employer and with colleagues who truly “get it” and often offer access to me before I even think to ask for it. I joke that since coming to work for Easter Seals, I rarely have to open my mouth in regards to access: my colleagues are always thinking about it first. And not just for me — they want to make our workplace and everything we do here accessible for everyone.

My daughter is now 33 and is working as a Vocational Instructor at the Addie McBride Rehabilitation Center for the Blind in Jackson, Mississippi. Erin is a beautiful, bright spirit doing her own part to hurry people along in this race for inclusion, and I am very proud to be her mother.

I am also proud of the progress being made to eliminate discrimination on the basis of disability and am mostly still smiling as I think about all that is left to be done. Forward motion is happening, and really, based on the history of my personal experience, that’s about all that can reasonably be expected.

I’ll be celebrating this anniversary in two ways: by acknowledging that forward motion, and by looking ahead to what is possible in the next 25 years. The potential is grand!

Learn more about how you can recognize the anniversary of the Americans with Disabilities Act.

Plan to join our Twitter chat on disability rights on July 23 at 1 p.m. CST with #ADAToday.