Married people with disabilities often experience penalties that force the couple to give up necessary benefits. Congress must address marriage penalties so everyone has the chance to marry without endangering the key supports they need to live in the community. Tyson is one of the many people with disabilities who have experienced this penalty, and he shares his experience below.
I have been getting Supplemental Security Income (SSI) since I was 19 years old. I’m now 46. These benefits are important to me; they help me pay for things I need, like rent and food. I have always been vigilant to report my earnings and document everything Social Security asked of me.
In 2021, I got married to the love of my life. My wife works for our local school system and is a wonderful partner. I didn’t know, though, that getting married would so greatly impact my SSI.
In late 2021, I got a call from Social Security. It was time to do the regular review, where Social Security asks the same questions over and over to make sure I am sharing all the information and earnings I have. During the call, I shared that I got married, gave them the date and information, and shared my wife’s income information.
Because I got married, I was told that my SSI would be cut from about $800 a month to $500. This was because of my wife’s income. But SSI is my only source of income, and it felt like I was punished for getting married. At the same time, I also found out my rent would increase by $200 a month. So, my wife and I had to do more with even less.
The Social Security office also told me I could get a Social Security Disability Insurance (SSDI) benefit through my dad’s work record. I spent hours tracking down school records to make sure Social Security had what they needed. Several times, people who worked at Social Security told me I would get SSDI. But, in the end, they rejected my application. I felt like I was lied to and that my time was wasted.
I do my best to pay my bills and live the best life I can. But I am trapped in poverty.
I can’t help that I have a disability, and I want to do more to contribute to our household and have planned to get a part-time job. I am worried that doing this will make me lose my SSI and other benefits. My wife and I have thought about moving to another state to be near other family members, but that may cause me to lose my other benefits, too.
I don’t know what to do, but I know that people should not have to live like this or be punished for marrying the person they love.
https://thearc.org/wp-content/uploads/2021/08/Untitled-designSSI-blog-featured.png400375Pam Katz/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngPam Katz2023-03-02 12:46:312023-04-10 12:30:19For Tyson, Marriage Changed Everything – Including His SSI
Finding love is something many of us hope for, including people with disabilities. Lauren and Scott met while they were participating in programming at Favarh (The Arc of Farmington Valley). At first, they forged a strong friendship, but as the years went on, their relationship eventually blossomed into love. Now married and living together independently, Scott and Lauren spoke with us about their journey and what it means to make their own choices in love and life.
How did you meet?
LAUREN: At the age of 21, I was looking for a job and found Favarh. I was nervous and didn’t know who was going to be friends with me, but I met Scott on my first day. It was amazing because that night, I went home and I’m like “Wow, I think I made an actual friend.” When I met him, he stuck by me all the time. He worked with me for two years at Michaels, he and I had a very good friendship. Everyone kind of knew that he and I would end up together. I was coming out of a relationship, and I tried some dating sites. I thought it would be really nice to see what it was like.
SCOTT: I actually talked her out of it.
LAUREN: He told me I shouldn’t be on apps, and said “Let me be the one to be with you.”
SCOTT: I didn’t want anything to happen to her.
LAUREN: I was nervous because I didn’t know what to expect out of him. I had been verbally abused before. But I knew at some point, there’s got to be someone out there who can put me first and for me to rely on.
How did you start dating?
LAUREN: No one asked the other person out, we just did it together. We just wanted to go out and see what it’s like.
When Scott and I became boyfriend and girlfriend, my grandfather passed away. It was really weird timing. For me to have Scott was really special. He was the first one I messaged after I heard the news because I knew I needed my friend to understand what was happening. He came to my grandfather’s memorial service and it was so nice.
My mom and dad were very supportive of us going out and took us places (and still do.) It kind of amazes me now to look back and say wow, this really has happened. He’s been by my side throughout the years. It’s really hard to be away from him.
We got engaged in 2019. He needed my parents’ permission to propose to me. Scott and my dad went out to dinner together, and then Scott and my mom separately.
Why was getting married important to you and what does it mean to you? What was the process like?
LAUREN: Just the fact that we’re together. Knowing he’s there for me is a great feeling.
SCOTT: Relying on each other more. Knowing that we’re husband and wife.
LAUREN: Planning our wedding was a long process. It was the hottest day of the year that we got married. He wanted to wear his bathing suit under his wedding suit! It was really hard trying to figure out everything. I have a brother who lives in Denver, and he was a part of the wedding. We had two best men and I had junior bridesmaid and a maid of honor. It was really fun having my hair and makeup done. Everyone in the wedding sat with us at our table. All I wanted was a small wedding, but we ended up inviting a lot of people!
Why is being independent important to you?
LAUREN: It’s important to be in control of what you do.
SCOTT: Our parents don’t come over as much as they used to. We’ve had less staffing, they’ve backed off of helping us. They used to observe and supervise us cooking dinner, they used to check on us a lot more. Now we do our own laundry, plan our days, go to work, and come home. It is awesome to be able to stay up as late as we want. And now [living together], we don’t have to message each other – we don’t have to use our phones as much because we’re right here.
What do you see for your future?
LAUREN: Having kids—someday being parents. I can see us having independent jobs.
SCOTT: Growing old together. I can’t imagine being with anyone else.
https://thearc.org/wp-content/uploads/2023/01/lauren-and-scott-blog.png400375Pam Katz/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngPam Katz2023-01-19 15:24:052023-01-19 15:44:40From Friendship to Lifelong Love: Scott and Lauren's Journey
Carlos is 32 years old, lives in Maryland, and has cerebral palsy.
His life has been filled with obstacles, but despite all that he has faced, he’s remained determined to achieve his dreams.
Carlos was born in Ecuador, where the landscape of disability services was far scarcer, and discrimination far worse. They did not have classes or formal disability supports available. When his mother Maria took him to doctors, she was repeatedly told he would never walk or talk, would spend his whole life stuck in bed, and that “they should just let him die.” Unable to accept this as her son’s fate, Maria and her family left their entire life behind to seek out better and immigrated to the United States when he was four years old.
While the disability service system in the U.S. was a marked improvement, Carlos still faced difficulties growing up—many due to misperceptions and discrimination from those around him.
“I was bullied in school. No one wanted to respect me. They made fun of me, how I walked…how I talked. I had trouble learning to walk and it took me until around 14 years old to walk without wheelchairs, walkers, and other devices. I had to learn English—it was difficult. I didn’t really have any friends and would sit by myself. I was sad. I don’t want that to happen to anyone else—it felt terrible.”
Things continued to be challenging as Carlos graduated and transitioned into college.
“In college, it was the same thing. People did not respect me or help me. Teachers have a lot of students and don’t care. I ended up leaving Salisbury University to finish my associate’s degree at a community college because they did not have the right program or supports for people with special needs. Then I went to Gaucher College and finished in May of 2022. It was so hard for me to do it, but I can do it.”
Carlos is proud to have completed college and entered the real world. But even outside of the classroom, inaccessible public spaces and misperceptions still plague him as he navigates his adult life. He often falls in cities that do not have the access features he needs like ramps, curb cuts, and elevators. People often think he is drunk because of the way he talks and won’t let him into places—even after he tells them he has cerebral palsy—because they don’t know what it is.
“They hear the way I talk, and they think I am stupid, but I’m not. I know what I am doing. I speak two languages and I’m good at math. I am proud of how far I have come in my life. I can walk by myself, I can use the bathroom alone, and I graduated from college. I want people to stop bullying handicapped people like me.”
Carlos now works at TDezz Badass Creations as part of the accounting and management department. He likes the job and enjoys helping people. But he dreams of opening his own business or working in Washington, DC. He loves going to the movies and the mall, especially with his girlfriend Naya whom he met in community college. He loves his dogs Lucas and Tyson, his siblings David and Karla, and his parents Maria and Carlos who are the most important people in his life and have been there for him through it all. He visits his relatives back in Ecuador often and is proud of his family.
Despite the challenges he has faced, he still chooses hope every day. He notes that “My biggest fear is that people won’t understand me, but I never give up. A life is nice to live and is beautiful. Life is too meaningful to waste.” Carlos is a resilient and determined man—but the barriers he has encountered, both in his physical environment and the perceptions of those around him, are harmful and limiting. As Carlos emotionally shared, “Everyone will be disabled at some point in their life. Things need to change.”
https://thearc.org/wp-content/uploads/2023/01/Carlos-blog.png400375Pam Katz/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngPam Katz2023-01-06 15:06:532023-01-11 20:16:10Despite Obstacles, Carlos Is Determined To Pursue His Dreams
What do you want people to know about Down syndrome?
I want people to know that just because I have Down syndrome doesn’t mean I can’t live a fun and exciting life. I have a great life because of my Down syndrome. I want people to know that people like me with Down syndrome are fun, we are loving, we love to hug and we can own our own businesses.
Be nice to me and respect me because I am human, not because I have Down syndrome. I just want to be treated like everyone else and given the same chance to do things. Yes, I can do it. I just need a little more time.
What is a time you were upset or frustrated by how someone treated you?
I got frustrated one time when my sister Kate took me grocery shopping. I wanted to shop by myself and she didn’t want to let me. I got upset and frustrated. She then let me shop by myself and I did a great job. I was able to check out by myself too!
What is a time someone believed in you?
I was asked to be a guest bartender two different times. Once at El Buffalo and once at Raw and Refined. My nephew, Tyler, and the bar’s owners believed I would do a good job. I was so happy they believed in me. It made me so happy to see all my friends come out and support me too. I did a great job being a guest bartender and wouldn’t have known I could do it if they didn’t believe in me.
What are you most proud of?
I am most proud of my family. I love all my 5 sisters and 1 brother. I love that we all get along. I am very proud that I graduated from North County High School in 2002 and from Gigi’s prep in 2021. I am proud that I can work at my three jobs and make my own money.
I am proud of my life.
What does a good life look like to you?
I am happy with my life. A good life looks like my life now. I want to spend lots of time with my girlfriend Emma. I want to keep going on family vacations with my 5 sisters and 1 brother. I want to always stay living in my house. I want one day for all my sis and brother to live with me.
I hope one day to get married and have my own family. I would love to have my own business, work out more and get healthy.
https://thearc.org/wp-content/uploads/2022/10/Kevin-blog.png400375Pam Katz/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngPam Katz2022-10-11 21:05:222023-01-18 14:48:58Meet Kevin: "Yes, I can do it!"
I grew up in the Seattle area. I wasn’t diagnosed [with autism] until I was 12, even though I struggled from the day I came out of my mother’s womb because we couldn’t find a competent doctor. I was struggling with severe OCD and panic attacks that consumed my life. I was that “weird” kid in the corner of the classroom with his hood on, not making any eye contact, or even speaking. I was completely closed off, a prisoner inside my own body. When I finally got my diagnosis, suddenly I wasn’t just that weird kid anymore, I was the weird autistic kid. A word that, back in 2003, was very misunderstood and oftentimes resulted in either pity or unconscious spite, for my behavior, on face value, made it seem like I was lazy and disinterested in life. If only they could hear my heart’s silent cries for help.
Suffice to say, this diagnosis, although welcomed, made me even more of an outcast when it came to my interactions, and lack thereof, with society—there’s a lot of stigma. I eventually had to drop out of public school due to my struggles which quite rapidly dissolved all bridges to the outside world, and from 12 to 27 I was completely isolated—my mom would bring home my work and take it back to school for me throughout middle school and in high school, I stayed home and took online classes to receive my GED. I missed out on the entirety of my adolescence, teenage years, and transition into an adult. I didn’t know what it was like to have friends or to even be around others outside of my immediate family. Isolation can do strange things to the mind, the repercussions of which I still deal with to this day.
In my early 20s, I began dabbling in poetry, and this art soon became the friend and companion I had always yearned for. To be able to express my pain, frustrations, dread, sadness, and ongoing struggles was extremely liberating, and to create a piece of art, a poem, out of my suffering, well…there’s not much that was, and is, more cathartic and healing.
In my mid-20s, I self-published a book of poetry that was met with much appreciation for the rawness and transparency it portrayed into my lived experience. The book was featured in the LA Times, earned an Honorable Mention at the 2012 NY Book Festival, and won the award for Literary Excellency at the 2013 International Autistic People’s Awards in Vancouver, Canada.
A few years later, I decided to try and take my advocacy efforts to the next level. I was 25, on disability benefits with no job, living with my parents, and hadn’t had friends in almost 14 years. I knew I had a lot to give and not much to lose, so I set my sights on becoming a public speaker to speak up for those who are pushed to the margins of society like me.
Things took off quite rapidly, as I had a natural talent for connecting with others through topics of vulnerability, a positive by-product of spending half my life alone and looking inward into my painful emotions. Some call me a self-advocate, but I’m not doing this for me. I am doing this so that others have it a bit easier. I shed hindsight and insight to generate foresight for others and perform spoken word poetry in my presentations to offer a more dynamic look into the world of autism, mental health, and the suffering of existence, for it is my belief that art would cease to exist it if wasn’t for the universal commonality of human suffering.
I’ve come so far in life that I feel as if I have lived multiple lives. I had so many dreams growing up, but my struggles got in the way and squashed them, along with an insincere societal environment that put the final nail in the coffin of what I had hoped for my future.
In July of 2021, I decided to take a huge risk and move to Los Angeles by myself to start a new chapter of personal and professional growth, without knowing anyone. If there is one thing my seclusion has always brought me, it was time alone with my heart; time I did not, and still do not, take for granted, for the heart knows the way, and I always listen to mine.
I had been speaking full-time for about three years, but I conflated this professional success with having a personal life, and when travels ceased during COVID I realized that while I may have been traveling quite frequently, I was still very much in a bubble, for my only socialization in my personal life was with my mom, the one human who had been by my side since day one. The decision to move to LA by myself and leave my mom’s side, the sole source of safety and support I had ever known, was brutally painful, to say the least. However, discomfort is the impetus behind growth of any kind, and now, for the first time in my entire life of 31 years, I am fully independent, and for the first time in 20 years, I can finally say three words I had always dreamed of saying: “I have friends”. It’s excruciatingly overwhelming at times and emotionally exhausting, but I know I have to encounter the immense growing pains in order to make up for my lack of social experience.
I have an incredible career, but the friction I encounter with society on a daily basis is a lot to cope with. My job requires a lot of travel, and I’ve had numerous meltdowns (mental and emotional breakdowns due to system overload stemming from external stimuli and exacerbated symptoms of OCD and anxiety, all in the midst of an extremely overwhelming scenario) at airports where passersby see a grown man curled into a ball, sobbing, rocking back and forth, and biting his nails. If I looked more disabled, maybe people would be more understanding, but no one would know or think I have autism when I’m walking down the street—so if they see me having a meltdown, they don’t recognize that as autism, and either look upon me as if I am crazy, or don’t look at all and pretend I’m invisible. I am not sure which response is more soul-crushing.
It’s a rough world out there, for during my moments of crisis, where all I need is some simple reassurance and compassion, I have had cops called on me. When I have meltdowns in public, I just look like a scary big grown man, and no one wants to come close to me. I receive no help—and I know a lot of people go through these situations too. Once I was in Dallas on a layover, and I missed my connection. I had a meltdown and was crying. Ten desk agents were right in front of me and not one even looked at me. I even said, “I have a disability, can someone please help me? ” They just continued to ignore me. The trauma that occurs in situations like this deepens a lifelong wound of being cast aside by society.
In situations like that, I need simple human connection. People need more training on emotional awareness—look into my eyes and see that I’m struggling. I know it’s not intentional, it’s from a lack of awareness. I don’t need you to fix anything, I just want support. Just sit next to me and ask if there’s anything you can do. I will most likely say that just asking that question helps.
We run from things we don’t understand because they scare us, for we as humans fear the unknown. Yet, if we can stop and stare back at our fears, instead of turning our back on them, we begin to see that which scares us dissipate like morning fog, revealing behind it a beautiful sunrise.
Travel is picking back up again for my speaking engagements now, and so I embrace the suffering. My experiences with a lack of understanding are frustrating, but I continue to do it because I have a passion inside of me to tell others how far I’ve come, and I want others to know they can do it too.
I gave a TED Talk at UCLA a few months ago, and recently did my first open mic performance. My journey has always been arduous, but now I can say that it has become beautifully arduous, for so many great things are happening for me now. My potential is sky high, and I have had more personal and professional success just one year into being fully independent than I had in my prior 30 years combined. Who knows what I’ll do or where I will go, but I have full faith that this journey will only continue to become more fulfilling. I followed my passion and success found me. If it is one thing I don’t want to regret on my deathbed, it would be not following my heart at any given moment– we have to follow our heart, it truly knows the way! You may go on some beautiful detours and scenic routes, but with patience and gratitude, life will unfold before you.
https://thearc.org/wp-content/uploads/2022/09/Russell-blog.png400375Pam Katz/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngPam Katz2022-09-19 17:20:482022-11-23 09:17:29I Turn My Suffering Into Art To Tell Others How Far I’ve Come, so They Know They Can Do It Too
My name is Yusuf and I’m 10 years old. I am in 5th grade. I like to play hockey, write blogs, and make videos for fun. I am hoping to create a YouTube channel soon. I like school so far and one of my favorite subjects is math.
Something I am proud of is playing hockey and doing stuff above grade level. I can also play soccer really well—I really like sports. I want people to know that I’m actually very smart. I’m learning eighth-grade things.
But when I was young, there was this one kid that kept making fun of how I speak, and I was only in second grade. I thought if I could just be nice, everything will work out, and I didn’t know how to defend myself. Eventually, he stopped bullying me and I learned how to be nice, but to be yourself and don’t let people take advantage of you.
One of the things I like to do is play with my friends during recess. We play freeze tag, tag, and kickball—and ultimate frisbee. My best friends are Whitman and James. I like to play games with them, and we make up missions to solve a puzzle.
One of the best things that happened to me was when I got my iPad Pro. On my iPad I make music and videos, and draw!
When I grow up, one of the things I want to do is play hockey and be on a team.
When I am older, I will also get my own house and after that, try to take care of the bills. I think I will know how to take care of the house and my money and use it responsibly and have a good life. I have never been on a plane, and I would like to go to Nigeria someday and see my family.
I would help change the world by being nice. People are always mean and if I taught people how to be nice and why, and all the advantages of being nice and the skills I have…people would be kinder.
https://thearc.org/wp-content/uploads/2022/09/yusuf-blog.png400375Pam Katz/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngPam Katz2022-09-12 20:46:132022-10-06 15:22:56Meet Yusuf, A 10-Year-Old With Autism and Big Dreams!
“We’ve spent most of her life waiting for the help we need, for the wellbeing of our family.”
Soojung teaches middle school math and has three wonderful children. Her middle child, Alice, has Rett Syndrome, and has severe seizures, scoliosis, and uses a G-tube for nutrition, fluids, and medications. Alice has had many major and minor surgeries throughout her childhood, and every time Soojung and her husband requested at-home nursing care for her recoveries, it was denied by private insurers.
Alice’s pediatrician sat Soojung down and said, “You can’t go on like this.” The round-the-clock care and the toll of the stress was overwhelming them.
With the pediatrician’s help, Alice was finally accepted for services through the Medicaid program when she was 11 years old. Night nursing services led to a great improvement in Alice’s health, keeping her out of the hospital for the first year in her life. Soojung went back to the classroom, where she loves teaching math. And today, with the addition of day nursing services, Alice is 15 years old and able to participate in school, at home during 2020, and in-person in 2021 while Soojung teaches her students.
The Arc is fighting to make sure no family has to wait years for services that improve a child’s health and ability to thrive in the community.
“My daughter has the right to receive an equal chance of living her life, and Medicaid provides that extra help she needs to survive, learn, and thrive. The Arc’s work is so critical to ensure that Alice has a fulfilling life.”
https://thearc.org/wp-content/uploads/2019/08/ArcLogo_CMYKColor_Pos.png400375Pam Katz/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngPam Katz2022-09-12 18:28:342022-10-12 12:05:52Alice and Soojung's Story
“I would love to see the day where everybody can stand on the mountain top and say ‘this is who I am and I am proud of it.’” – Shannon Mattox, State Director of The Arc Georgia
Limbric Mattox is brilliantly unique.
That’s how his mother proudly describes him.
“He’s unique in his own ways,” said Shannon Mattox, State Director of The Arc Georgia. “He’s very smart. He has his gifts and he has his talents.”
Mattox started her position at The Arc Georgia in July 2021, leading Georgians in advocating for people with intellectual and developmental disabilities.
Limbric is 11 years old and going into the 6th grade. He loves geography and was the runner-up in his 5th-grade class spelling bee.
“My disabilities will be even better when coronavirus is over. Other than that, I like it,” said Limbric, who is proud of his disabilities.
He has invisible disabilities and sensory obstacles.
“He’s a normal kid, doing normal things. He likes toys. He likes to watch TV. He loves electronics,” says Shannon, adding that Limbric is quite tech-savvy. “To him, he has a normal life.”
But as a Black family living with disability, they have faced many challenges. Discrimination is a constant factor in their lives, particularly in education.
“All the time,” she says. “I’ve been talked to and treated in IEP meetings over the years like I’m dumb and poor just because I am Black. I am my child’s first advocate.”
Shannon recalls countless examples of how she and Limbric experienced discrimination based on their race and Limbric’s disabilities.
“My very first experience was my son being observed in class without my knowledge. I should’ve been notified right away,” says Shannon. “Those aren’t games that should be played with our child.”
In meetings with school administrators and teachers over the years, Shannon has experienced many challenges.
“When you decide to speak up or have boundaries, then you’re the problem. You’re the angry Black woman,” she says. “The thing that keeps me whole is my faith and the fact that my son has come so far.”
Shannon earned her Master of Business Administration degree in 2015. She completed the Partners in Policymaking program in 2018. Shannon began volunteering and serving on the boards of organizations committed to supporting people with disabilities and families. These experiences and her greatest role as Limbric’s mother empower her with tools to navigate special education and advocate for her son and other people with disabilities.
The Arc fights for the rights of students with disabilities, and is part of a class action lawsuit against the State of Georgia for discriminating against thousands of public school students with disabilities by providing them with a separate and unequal education in the Georgia Network for Educational and Therapeutic Supports (GNETS) program.
Students in GNETS are not only segregated from their non-disabled peers but also receive an inferior education. Many students in the program are not taught by certified teachers and instead are primarily taught through computers. They cannot access the basic credits they need to earn a diploma, resulting in an abysmally low high school graduation rate. Limbric is not in the GNETS program, but the fact that the system exists for kids just like her son horrifies Shannon.
“Children should be able to go to their neighborhood school and there should be a program to accommodate every child. There should be resources to accommodate every child. Every school should be a beautiful environment that every child can walk into,” says Shannon.
As The Arc Georgia State Director, part of Shannon’s mission is to team up with families to fight for the rights of people with IDD, tear down discrimination, and help eliminate the stigma attached to disability, particularly among Black families.
“Thank you for taking the time to highlight my family’s story. I hope it helps,” said Limbric.
“I would love to see the day where everybody can stand on the mountain top and say ‘this is who I am and I am proud of it,’” said Shannon.
So that everyone’s uniqueness can shine. Shannon says despite the challenges, Limbric’s future is brighter than ever.
“He has to be able to take care of himself one day. I want him to go to college if that is what he wants to do. I want him to love his life and be a happy whole man – no different than any other parent,” said Shannon. “We still have dreams. We still have goals. We still have things that we desire as a family.”
For the past 32 years, the Americans with Disabilities Act (ADA) has protected the civil rights of people with disabilities.
Recently, we spoke with Steve Ferreira, who shared how the ADA has impacted his life and how he hopes to ensure that the promise of the ADA is being kept in his community!
Steve was born with cerebral palsy in Taipei, Taiwan in 1988. He graduated from Bellevue College in 2013 with an Associate Degree with a concentration in Communications. He is currently attending Central Washington University to obtain his Certificate in Accessible Studies.
In November 2011, Steve started a non-profit called Beyond Disabilities to further his goal of disability awareness. As a motivational speaker, Steve aims to raise disability awareness within every community he addresses. In addition to his motivational speaking, Steve has been involved in athletics. He has competed in international competitions both in the United States and Europe, earning the bronze medal in shot put in 2008 and the gold medal in discus in 2010.
Q: What does the ADA mean to you in your life? Why is it so important to you?
The Americans with Disabilities Act (ADA) was enacted in 1990 and is a civil rights law that prohibits discrimination against people with disabilities. This includes jobs, schools, transportation, and public and private places that can be accessed by the public. It gives protection to all people with disabilities.
It is a law that can be quoted and used when there is a situation where people with disabilities are not receiving the services they need or do not have access to facilities. It is a powerful law.
In 2016, I contacted my hometown, the City of Renton, Washington, to put in signs at a dangerous crosswalk close to my home where I had almost been hit by a car. But nothing happened at the time.
Two years later, while crossing the street in my wheelchair, I was hit by a car that made a right turn onto the road. There was a red light but no warning about watching for pedestrians. I was okay, but my legs would be gone if my wheelchair had not had a leg guard.
I contacted the city again and told them what happened. Using the ADA to back me up, I was able to get the city to install a turning light at the crosswalk. It took two more years for the city to take care of the situation, but I felt a sense of accomplishment when it did.
I drive my wheelchair all over and have over 10,000 miles on it. I drive around 18 to 25 miles a day. If not for the ADA, we would not have cutouts in the crosswalks and lifts on the buses. All it takes is one step to stop me from getting where I need or want to go.
Q: How does the ADA impact you at school and work, in getting around, using transportation, and accessing public and private places?
I typically use public transportation and it’s important for the buses to have lifts installed. There are times when I’m waiting for a bus and the bus will arrive and the lift is broken. Everyone else can enter the bus, but I have to wait sometimes an hour for another bus with a working lift. I joined a committee for people with disabilities in our Metro system to address this issue. Though the committee discussed this issue, nothing was accomplished. I eventually left the committee because I was so frustrated.
On another note, it’s discouraging to have a brand-new building built that does not plan well for accessibility. For example, when I try to access the building, sometimes, the building does not have an automatic door. The doors are typically very heavy, and it is hard to maneuver them when you are using a wheelchair. People need to be more diligent when constructing buildings to make sure they are accessible, and they need to plan to ensure they do not block accessible paths or routes when constructing buildings too!
Q: Tell us about the accessibility program you are taking. What inspired you to pursue this study? What is your capstone project about?
I am currently taking classes at Central Washington University for a certificate in Accessible Studies. There are classes in accessibility and user experience, universal design, accessible information design, and a capstone project.
I have finished the first three classes and I am currently working on my capstone project. My capstone project is entitled “The Importance of Disability Awareness as Part of Diversity, Equity and Inclusion Programs in the Corporate Setting.” I am comparing three companies’ diversity, equity, and inclusion programs and analyzing their attention to disability awareness. It is eye-opening how companies are paying attention to other minority groups but ignoring disability.
I decided to take this program to educate myself on the ADA and how it relates to the empowerment of people with disabilities. Unfortunately, there is still a lot of discrimination against people with disabilities.
Q: Do you plan to advocate for accessibility for people with disabilities? What do you hope to do?
I have done some consulting with local cities, but with my certificate, it will help to have credibility and will add to my resume. I would like to help cities adhere to the rules and regulations of the ADA and thereby help the disability community.
Q: What do you want others to know about the ADA and why it still matters?
The ADA is important to everyone, not just people in wheelchairs or who use other mobility aids. All of us may at some point have a “temporary” disability and the ADA protects them as well. It is a social justice issue.
There are also “invisible” disabilities that are not obvious when first encountered. People with invisible disabilities are also protected by the ADA and are entitled to accommodations. Just because you cannot “see” a disability does not mean that it does not affect one’s daily life and day-to-day functioning.
Disability is unique because it is the only minority group that a person can join at any time in their life.
Q: How can others get involved in advocacy to support the implementation of the ADA and other disability rights efforts?
Others can get involved in advocacy as allies to people with disabilities.
I do motivational speaking to groups about disability awareness. But, when I am out and about, I still get the greatest to the worst reactions from people. Sometimes, people will even come up to me to pray to cure my disability. People need to know that people with disabilities are just like other people. It just may take us a little bit longer to accomplish our goals. Allies should also make sure they know about the ADA and what people need to do to comply with the law – and not take it for granted!
And sign up to advocate with people with disabilities nationwide at thearc.org/action!
https://thearc.org/wp-content/uploads/2019/12/MFP.png400375Pam Katz/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngPam Katz2022-07-19 16:55:232022-07-20 13:28:07Why the ADA Matters to Me: A Conversation With Steve Ferreira
Jackie McRoy is a home manager for The Arc of Central Alabama. She supports individuals with intellectual and developmental disabilities (IDD) who live in a group home. Jackie is a direct support professional, who cares for her clients like family.
“The people I support mean everything to me,” said Jackie, who has supported people with disabilities for 8 years.
When the COVID-19 pandemic started, Jackie and her team had to scramble to keep people safe. They did the best they could up against many challenges like a global shortage of personal protective equipment (PPE) and a highly contagious and dangerous virus. As the pandemic surged, Jackie’s clients were the most at risk.
COVID-19 disproportionately sickens and kills people with disabilities. Despite exhaustive efforts to keep the virus out, it found its way into group homes and congregate care settings all over the country.
“Scary times … those days of the pandemic were scary times,” Jackie shared with The Arc.
Then, the virus hit closer to home than ever for Jackie. Her mother died from COVID. She was not vaccinated.
Jackie decided to get the COVID-19 vaccine and booster. She believes the vaccine saves lives – and could have saved her mother. Jackie has encouraged other support workers to get the vaccine.
She also joined The Arc’s health program in participating in a project focusing on COVID-19 vaccine outreach and public education. The program received a subgrant from the Association of University Centers on Disabilities (AUCD), as part of a grant AUCD received from the Centers for Disease Control and Prevention (CDC).
The Arc worked with The Arc of Central Alabama, The Arc of Arizona, The Arc of Indiana, and The Arc of the Mid-Ohio Valley in West Virginia to collaborate on the development of local radio public service announcements (PSAs) airing in certain markets in those states.
“The safe and effective COVID-nineteen vaccine changed things. It has allowed us to reopen and go about our lives, with more security about our health and the safety of those we love, including the people with disabilities I help every day,” said Jackie.
https://thearc.org/wp-content/uploads/2019/08/ArcLogo_CMYKColor_Pos.png400375Pam Katz/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngPam Katz2022-06-28 18:02:572022-06-30 18:01:56Home Manager Jackie McRoy: We Are in a Much Better Place Thanks to the COVID-19 Vaccine
The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.