25 Years of the ADA – Where Have We Been and Where Do We Need To Go?

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The Americans with Disabilities Act (ADA) was signed into law in 1990, making this the 25th anniversary of this important civil rights legislation. Our community gathered this evening to celebrate this important anniversary, and I was proud to be there as a self-advocate and speaker to mark this important occasion.

The ADA has done great things to further access to the disability community, but it has benefited nondisabled people, too. Mothers with small children in strollers benefits from ramps and curve cuts. When people carry heavy or awkward items and need to open a door, they use automatic doors. These were not required before the ADA, so we all have something to celebrate today.

While we all benefit from these direct accommodations for people with disability, for some us, we rely on them. Most people find technology to be useful and a benefit, but I really need it to help me get around and organize my day without showing my limitations. I struggle to remember instructions and directions but having the internet allows me to see a visual map of where I need to be. I would not be in the position I am if I did not have my tablet. I would have a hard time remembering appointments, but because I can immediately put plans into my calendar, I don’t forget them.

Some people may be surprised to find out that I have writing difficulties. It is part of my disability. While I was in grade school I struggled to read and write. My hand writing would make a doctor’s handwriting look good! And I could not spell to save my life. If I did not have technology, ADA, or IDEA, would not be able to function the way I can today. Thankfully I am able to write and share my passions in this blog because of technology created with the help of the ADA. But not all disabled people have access to technology that can really help them. That is a problem.

The ADA is a great law that showed what Americans with disabilities wanted! Unfortunately, it has had trouble being put into practice. Even today I feel the ADA has not been able to be fully put into practice. There are still people with disabilities who are isolated from their communities. There are still people with disabilities who don’t have access to education and higher education. There are still people with disabilities who get denied proper employment because of limitations. These areas plague our country’s ability to implement all of the ADA standards.

While I was in Washington DC recently, I met a fellow advocate who could not keep a job in Washington DC because there is no accessible transit to help them get to their new job. For the ADA to be most affective it need to be part into practice everywhere and for all people with disabilities. The fact is there are still barriers for people with disabilities in the workplace, in community, and even finding a home.

Unfortunately, there are people with disabilities that are left out of ADA. People with mental illness still live on the streets or prison. Children with disabilities are not getting an equal education, especially for those with intellectual disabilities. Even though the ADA passed before I went to school, my family had to fight for me to receive the education I had.

While the ADA has done a lot for those with physical disabilities and sensory disabilities, there are still gaps in helping people with intellectual and developmental disabilities get access to their community. This is not only troublesome, it can lead to serious harm to people with I/DD. If I was in situation where my communication was limited due to a meltdown, and I lost control of my body, I can get hurt by police who would not be able to look at me and see my disability. They could mistake my movement as aggressive or hostile. Sadly the ADA has not been able to protect people with disabilities in these situations as we have seen in the case of Ethan Saylor and many others. Our movement needs to work on making the ADA stronger so people like Ethan can be safe in their own community.

The ADA needs to be followed more closely, and it needs to be applied more broadly to cover everyone with a disability. Accommodations for people with I/DD need to be considered, even if they are a bit more unconventional. My disability does not require use of ramps, but I do need understanding and acceptance of my invisible limitations. I want to feel safe to express myself in my community and to have options to avoid environments that cause sensory issues for me.

Additionally, I know that people with disabilities have many different backgrounds which can complicate their lives more. For example, people of color, LGBTQ, and women may find it more difficult to navigate in our society as their disability intersects with these other areas of discrimination. We need to work harder to make sure each of these communities can have all of their needs met.

Don’t get me wrong. I see that the ADA has done a lot, and I’m grateful for all that has been accomplished in these past 25 years. But I feel it can be stronger, and it can also be more practical for people with I/DD. The next steps are to expand reach so that:

  • All people with disabilities get equal work opportunities;
  • All people with disabilities have fair access to housing;
  • All people with disabilities get to vote and have their rights as Americans protected;
  • All people with disabilities have their voices heard;
  • All people with disabilities are protected from police brutality;
  • All people with disabilities have access to affordable and reliable transportation;
  • All people with disabilities get access to affordable, quality healthcare.
  • All people with disabilities get access to all aspects of community;

For the next 25 years, I think our goal should be to make the ADA more powerful in preserving the rights of all people, no matter what their disability and what marginalized community they might be in. Our voices need to be heard and respected, and the ADA needs to protect all of us. I believe it can! It was meant to!

Ivanova25thADAWe want to thank our frequent community blogger Ivanova Smith for today’s post. Ivanova is an intern for The Arc of King County and she is a civil rights activist and self advocate for people with I/DD. Ivanova is an active speaker who presents about disabilities issues around the state. Her most recent speaking engagement was at the 25th Anniversary celebration at Westlake Center on July 22. 

Why I Support The Arc

Robin Tatsuda

Why I Support The Arc

My name is Robin, and I didn’t grow up around people with intellectual or developmental disabilities (I/DD).  As an adult I’m not a parent, sibling, or extended family member of a person with I/DD (although my niece may have a mild intellectual disability and I just learned a third cousin I’ve never met has Down syndrome).  So, why do I support The Arc?  Why do I care about people with I/DD?

Ten years ago  I got a job doing behavior management in schools for youth who exhibited very challenging behavior, most of them had I/DD.  My first day on the job I fell in love with those incredible and unique human beings.  Over the years I did more and more with people who have I/DD such as coaching Special Olympics, providing respite care, and learning about services and support for these individuals and their families.  The more time I spent with this community, the more I loved them and their families.  I also learned more and more about the history of I/DD in this country and state, how far we have come, and unfortunately, how far we have left to go.  Over and over I saw that people with I/DD and their families are denied basic civil rights such as access to quality education, meaningful relationships, and inclusion within the greater community.  I saw individuals experience abuse and neglect by the professionals and the systems that are supposed to protect them.  I saw families struggle with isolation and fear for their child’s future.  I knew that society needed to change.

I decided to get my Master of Social Work so that I could address the social justice issues regarding I/DD.  With luck (and a lot of self-advocacy) I was placed at The Arc of King County for my MSW practicum.  What intended on being a 10-week part time practicum quickly turned into a full time job.  I just celebrated my 3-year anniversary at The Arc and am thankful to be part of this family and part of this fight.

I support The Arc because of the parents who fought for their kids to live at home, away from institutions.  Because these parents demanded that their kids have access to public education in their neighborhood schools.  Because parents demanded I/DD services and support  be delivered in the community.  Because of these parents, I was able to fall in love with people who have I/DD and find my professional passion.  Because of the success of parents and people with I/DD who demand inclusion, I am at The Arc.

I support The Arc because people with I/DD and their families should have the same rights as everyone else.  They should be able to live where they want, work where they want, have the relationships they want, have hobbies, and be part of a community.  As we continue to shape an inclusive society more people like me, who have no biological connection to I/DD, will fall in love.  More people will join the fight.

I support The Arc because inclusion needs everyone.

Today’s post comes from Robin Tatsuda, an Outreach and Advocacy Coordinator and Supervisor at The Arc of King County. Because people come to work at The Arc for many reasons, Robin wanted to share her recent reflections about why she became involved with our organization. We would love to hear why you support the work of The Arc of King County. Please let us know if you would like to share your reasons by contacting mwilkinson@arcofkingcounty.org. 

We All Want Freedom

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This blog post is written by a member of our community, Ivanova Smith, who is an intern at The Arc of King County. She is a self-advocate who is passionate about civil rights and disability history. We welcome other members of the community to share their blog ideas with us. 

Recently I have seen more articles giving support to returning people with mental illness and people with intellectual and developmental disabilities (I/DD) to institutions. Two recent articles came to mind. First a New York Times article called, Modern Asylum written in February of 2015, and a more recent article from The Atlantic called, Who Decides Where Autistic Adults Live written in May 2015. Both of these articles state support for such facilities.

In the New York Times article, author Christine Montrose believes that people with mental illness were harmed when we moved towards deinstitutionalization. Lack of support in the community forced people into inappropriate places like prison. I see her logic. People are not getting the care they need and it makes them a risk of being dangerous to themselves or others. But my question is basic: Why does a person’s need for support have to bar them from freedom? I think focusing on how to get more funding into the community is better then returning to institutions. Montrose also believes that institutions for people with I/DD provide more “structure” without returning to the historical versions of institutions. I am not so sure because her argument is very similar to the one used by the medical professional who started creating institutions back in the 1800s.

In The Atlantic article, Amy S.F. Lutz supports the use of segregated settings for people with developmental disabilities (DD). The article begins by praising a residential program in New Jersey with 47 residents and a very structured program. But the activities that the residents are offered seem to come right out of an institutional history book. Residents were ‘fitting wood shapes in a puzzle’ as a vocational activity. Other activities included working in a green house, painting at the art studio and delivering food through Meals On Wheels. While they are nice activities, and can be fun, they are very limited and very limiting.

Lutz criticized the new Center for Medicare & Medicaid Services’ rules that make life more inclusive for developmentally disabled adults. I support these rules because people with I/DD deserve to be supported in the community where they have their own freedoms. I am tired of all these excuses for segregation. Her argument is that segregated campuses can better support large number of adults with I/DD. Although Lutz shows photos of residents in one of these settings, she didn’t ask them how they feel living there. Instead, she quoted parent testimonies in support for the setting.

Lutz suggests that many community settings can be ‘isolating’ for I/DD adults if they struggle to make friends. She adds that segregated settings make it easier for them to find relatable friends. While some people with I/DD have difficulties meeting new friends, isolating them is not the answer. Instead, we need to create a society where the community interacts with people who have disabilities so they become more accepting. When someone with a disability moves into your neighborhood, be more welcoming of them.

Lutz also stated that community activities can be overwhelming for some people with I/DD. It is true that some people with autism have sensory issues when joining in community activities. However, the possibility of sensory overload should not preclude them from their rights and community choices. Instead, a support staff person can find a quieter area for the person, where their senses are not being overworked. I think the support staff for that person should find something in a quieter area.

Lutz did mention another residential program that was designed like a campus. It allows people to have more freedom but it did not go in detail about how much freedom and privacy. My concern is that residents do not have total freedom.

One thing makes me very uncomfortable about both of these articles. Both authors seem to believe we have to be segregated from the community at large in order to get support and to make friends. There are times when people should be kept safe in isolation, for example when there is a danger of self-harm or aggressive behavior. However, these should be temporary incidents while the individual is treated with proper mental health care. I don’t think they need to be stuck in long term care for having an emotional episode. Once the person is stabilized, he or she should be welcomed back into the community. I believe that imprisonment in an institutional setting is not going to make anything better.

When I was in Ellensburg I was invited to an open house for a farmstead-like setting for men with intellectual and developmental disabilities. I hear about these places all the time, but it worries me that these new forms of institutions are really popular with parents. At first it looked really nice and friendly. The lighting was dimmed to avoid sensory issues and it was an open space design. While those aspects were nice, I was bothered by the structure of time and rules that were imposed on residents. They had a strict schedule with no flexibility for sleeping in on the weekend. They were not given any privacy, as security cameras were placed throughout the facility, including in bedrooms and bathrooms. They weren’t given a choice about how to spend their day, and they have very little control over their lives. The residents felt like they were imprisoned without any say.

Another important issue not addressed in either article is how adults with I/DD can build relationships of a romantic nature when they are in these institutionalized settings. While many people may view us as children mentally, we do have sexual desires, just like other adults. These institutions do not make room for the possibility of residents developing or having intimate relationships. I was recently at a workshop about sexual assault in long term care facilities where I learned that residents don’t get any privacy. This causes strains and creates an environment that is filled with sexual tension, which can lead to increased chances for sexual abuse.

Institutions do not show respect for the individuality of the people in their care. When people are free to make their own choices, they feel happy and more independent. We have to have choices in our schedule, what we eat, and how we want to live. We need to be allowed to live like any other adult. If we want to bring beer home after work, so be it. We want to have intimate relationships. We want to sleep in on a weekend, and sometimes choose an unhealthy snack. We want to go out at night, we want to hang out with friends, and we want to go on vacations. We also want to have a say in how we spend our income, just like any other adult does.

When I was a child, I was put in an institutional setting for the first five years of my life and it sucked. I had a rigid routine, and I had no say about what I was allowed to eat, wear, or play. I did not know I had choices until long after I was adopted. I learned what it was like to live without freedom, and I don’t want other people with I/DD to experience that.

I understand why some people want to create new institutions for people with I/DD, especially when the facilities say they support the rights of people like me. No matter how ‘good’ and ‘safe’ these settings claim to be, these institutions will not protect our autonomy. When you have lots of people that need support in one place, it is impossible to respect each person’s freedom of choice. Any parent who is considering the placement of their DD adult child into a place like this needs to consider what their child really wants and needs too. Parents need to realize that freedom is taken away from their child, and their child is going to be emotionally hurt by the lack of choice. I believe that parents need to find an alternative design for supportive living that allows for connection of friends and allows for free choice in their lifestyles.

There is a reason the majority of I/DD advocates have stated over and over that institutions need to end. We want our freedom, and we want future generations to have freedom, too. Just because people need support, that doesn’t mean their freedom needs to be taken away.

How My LIfe Benefitted from Aquatic Therapy: An Adoption Story

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How My Life Benefitted from Aquatic Therapy: An Adoption Story

From an early child I grew up alongside the pool. As a child I couldn’t get enough of the water. I joined dive teams, swim teams, synchronized swim teams, swim camps, and at age 15, I got my lifeguard training certification. I taught swimming lessons all through high school and college. After college I became a Recreation Director for a large retirement community with… a pool! I worked side by side with physical therapists and physicians to develop aquatic exercises for the residents because the pool was a safer environment than land.

Years passed, I got married and decided to adopt children and began a family. Shortly after we adopted 2 school age boys from Ethiopia, we began the process of adopting a girl. Six months later we got a message from the orphanage director in Ethiopia: an 18 month old was left on their doorstep. She was very sick, severely malnourished and needing immediate medical assistance. They didn’t think she’d survive much longer in Ethiopia and their government was willing to expedite her adoption so she could come to the States to receive the care she so desperately needed. We signed the papers and headed back to Ethiopia not knowing what was in store for us.

At 22 months, our little baby girl came home. With a chronic fever of 104, febrile seizures, severe ear infections in both ears, giardia, pneumonia, strep throat, scabies, intestinal parasites … and the list goes on. She was 16lbs, and could barely sit upright on her own, let alone walk. She had the muscle tone of an infant. She was nonverbal, unable to even babble or mimic the sounds around her. Immediately we had PT/OT in home care daily as well as speech therapy and ongoing medical visits from a team of doctors. For a while I felt helpless. I desperately wanted to help my extremely fragile baby. So I did what I knew what to do – teach her “how to swim”. And so began a new chapter in my life.

I had previously taken infant aquatic yoga classes for my 3-year-old son (who was only 18lbs and severely malnourished himself) but I needed to do more for my daughter so I researched different techniques and ways to strengthen her muscles. I needed something to help with her poor postural control, balance, coordination and eventually, gait.

I was amazed at how much progress she made. She took her first steps in the water. She learned the basic concepts of crawling, reaching, turning and retrieving in the pool. The best part – she loved it! The water gave her confidence and me the reassurance that her strength will improve. And it did.

Beyza swimming jun1510 years have passed. My daughter is nearly 12 now. She continues to have cognitive and speech delays, but her gross motor skills are equal or better than her peers. She is turning into a beautiful young lady before my eyes!

Through my daughter I found my passion in life: to help not just children, but anyone who is health challenged, early or later in life, to feel better and have better quality of life through adaptive swim lessons, aquatic therapy and aquatic exercises.

Today’s Voice of the Arc is Sandy Karlek, a mother of three who is certified in Aquatic and Exercise Therapy. She is co-owner of Nurturing Water Therapies, LLC and is excited to share her experience helping her adopted daughter with special needs develop confidence and strength in the pool.

An Army of Special Needs Moms

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Today’s Voice of the Arc is from Rachel Nemhauser, an Outreach and Advocacy Coordinator at The Arc of King County. Rachel recently joined the staff of The Arc, and she is a parent of a child with a disability, too. 

The first time I when out to dinner with a group of parents who have children with disabilities I was actually surprised to notice the moms were smiling and laughing.

After three draining, difficult, traumatizing years of raising Nate I had assumed my days of silliness, fun and friendship were officially over. I imagined my future held only sad, stressful, desperate get-togethers with other sad, stressed out, desperate parents like me.  Seeing that I might smile and laugh with friends again – that I could laugh at all with a disabled child at home – pretty much changed everything.

For three years Nate’s delays had slowly revealed themselves, one after another, like ants from a hill. First he was late to crawl, then to walk, then to talk. His play skills were behind.  His adaptive skills weren’t emerging. His behavior and social interactions were challenging. There was no name for what he had and no explanation for his delays so I spent three denial-filled years trying desperately to believe he would catch up.  I was not the parent of a child with special needs, I told myself daily.  I’m not meant to be this.  I don’t want to do this. And since I was determined to not be the parent of a special needs child, it was obvious I didn’t need the support that actual special needs moms needed.  I didn’t need to connect with other moms and I didn’t need help because this was temporary.

Except it wasn’t temporary, and Nate never caught up.  After three years I finally came to some level of acceptance and admitted to myself that I needed support.  Thanks to the invitation from a friend, I decided to attend a Mom’s Night Out with a group of moms of children with disabilities.  Expecting a prolonged venting-session complete with whining, tears and miserable desperation, I was surprised to find a group of moms who, like me, were excited to be out to dinner with other grownups! They were cracking jokes, bragging about their kids, and giving advice about behavior problems. They were updating each other on life events, medical procedures and marriage woes. They were recommending good doctors and dentists, and even hairdressers familiar with working with our extra-wiggly kids.

That night I shared the most exciting news in my world: At three years old Nate had recently said “mama” for the first time. To a group of moms of typical kids this is happy news, if not a little surprising. To this group, it was time to celebrate.  They understood what “mama” means when you’ve waited three years to hear it. They cheered me on and celebrated Nate’s accomplishments as only they could. In short, they “got it” and it felt so good.

From then on connecting with other parents became crucial for me. I needed to check in regularly with this army of other parents. They were part of my new life and were where I turned to find the support, insight, perspective and humor that I couldn’t always get from the rest of the world. I needed to learn from those more experienced than me, and eventually I needed to support new moms who are where I was 7 years ago.

Today I no longer resent thinking of myself as a parent of a child with special needs. I don’t know if I was meant to do this, but I do know that I can do it. And I’m grateful for those laughing moms from so many years ago who showed me with their smiles that my future would still be joyous and full of laughter.                

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Parent to Parent at the Arc of King County is here to help connect parents to resources, information, and most importantly, other parents.  Contact Rachel at Rnemhauser@arcofkingcounty.org or call 206-829-7046 for more information.

Memorial Day Reflections

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On Memorial Day, our nation shows appreciation to those who have died while serving in the U.S. military. We want to thank everyone associated with The Arc of King County who has lost a loved one serving in the military. These parents, children, sibings, cousins and other family and friends made the ultimate sacrifice while showing patriotism for their country. And while many people are preparing for the three-day weekend with family and friends, we want to take this moment to reflect on those who have lost their lives in military service and share our sincere appreciation.

Functioning Labels Hurt our Community

This blog post is written by a member of our community, Ivanova Smith, who is an intern at The Arc of King County. She is a self-advocate who is passionate about civil rights and disability history. We welcome other members of the community to share their blog ideas with us. 

DoNotUse

I hate functioning labels. They do not accurately show what struggles and strengths people with I/DD have and what they have overcome so far. I believe that functioning labels are pointless in regards to autism. As an autistic person I hate it when people immediately assume I am “high functioning” because I have a certain level of ability. When I am given that label it doesn’t acknowledge what I have done to reach this point. The label ignores the hard work I’ve done in order to grow. Instead it assumes that I was always “high functioning” when that is simply not true. I did not learn to speak until I was five years old. I had meltdowns almost every day in school and the teachers didn’t think I could learn how to read. My mother worked with me to learn how to read because the school gave up.

Functioning labels are also problematic in the I/DD community because they separate people with various disabilities from each other. These labels divide us into different boxes, and this makes it hard for us to choose how we want to be supported. It takes away the civil rights of those who are deemed “low functioning’” as if they can’t make their own choices. At the same time, those who are deemed “high functioning” are turned away for needed supports because their IQ is not low enough. This is not good for our community because it separates us and makes it so we can’t be seen as equal.

I experienced the unequal difference myself while in junior high and high school. The special education program separated the “high functioning” students from the “low functioning” students. I was put into the high functioning classes. This made me confused, and I did not get to fully connect with all of my fellow peers. I did not get to unite with my community, and I could not be with the people I related to the most. This separation from my peers also made me more vulnerable to bullying because I did not have any extra protections.

This separation did not provide students with an equal education. One of my friends was put into the “low functioning” class, so he had more protection and support, but his access to educational classes was limited. Because of my label, I had more chances to get into regular academic classes like history, while my friend had fewer choices and options.

Now that I’m out of school, I struggle to get support services because I am deemed “high functioning”. This is challenging because even though I am independent, and I am married, I still do need support. Because I don’t qualify, my husband must provide a lot of additional help. I can’t cook because I have poor depth perception; I have difficulty with the fractions involved in measuring; and I also struggle with the sensory issues related to cooking. I also need support for transportation because I can’t drive. I mostly rely on mass transit or my husband for local travel to work and appointments. And even though I am 26 years old, I still have meltdowns.

Just because I can do something, that does not mean I can do everything. And just because I can do something, that doesn’t mean that everyone with autism can do the same things. People who are deemed, “low functioning” can do some things I can’t do. It has nothing to do with limitation, but more to do with difference in skill. I am a verbal autistic; but I know nonverbal autistics who are smarter than me and who can write better then me. Nonverbal people have been underestimated for a long time and their education has suffered because of it.

The I/DD community needs to come together and say no to functioning labels because it hurts all of us. I get mad at autistics online that throw people with learning/intellectual disabilities under the bus. We are all part of the same community so there is no reason to attack one another. In many ways, I think that functioning labels has actually caused this issue.

As those who know a bit about me are aware, I’m a historian who is passionate about the evolution of our community. Historically, the institutions used functioning labels to group individuals with disabilities together. They used “moron” as what we call high functioning. “Imbecilic” indicated a medium level of functioning, and “idiot” referred to low functioning. I find it funny how people are upset about using the r-word today, but people still use these other words without blame.

In the late 1800s and early 1900s, people with I/DD were labeled this way to dictate where people could live. Morons were still supervised in institutions but they could move more freely and had more work duties; imbeciles were more restricted; and idiots had the most restrictions and least opportunity. Additionally, one of the punishments in institutions was to put morons who broke the rules with the idiots as a form of humiliation. This forced people who were labeled as morons to fear the other people with disabilities who were labeled as imbecilic or idiots. These labels allowed the people in authority to create a pecking order that put us against each other.

This is one of many times in the history of our country that we’ve been divided from each other as a form of oppression. During the Civil War, slaves who had lighter skin were treated differently from slaves with a darker skin pigment. Instead using functioning labels, skin color was used to split the community and make those with darker skin resent those with lighter skin. Functioning labels have divided people with disabilities just as skin color has been used. The labels separate us into groups, thereby making it difficult for certain groups to get services. I think that all people with I/DD should receive the supports they need without the use of a functioning label. Every individual has unique needs, and an assessment of that person should drive service availability. We need to be inclusive for everyone with an I/DD, not just the “high functioning” individuals. We need to value each person equally.

Unfortunately, some people talk about inclusion but still want to separate us based on perceived abilities. When people talk about inclusion, it often sounds like they are only referring to “high functioning” people. They seem to think that self-contained class rooms are still okay for low functioning individuals. These people discriminate based on one’s ability to communicate verbally or on different modes of learning and expression. Inclusion should be for ALL people with I/DD.

Can you imagine a world where I/DD students are fully integrated in classrooms everywhere? I can’t wait until that day comes! It is time to get rid of the labels that support ableism, segregation, and other barriers to equity that truly hurt our community. Real inclusion includes ALL of us.