hillary clinton at the democratic national convention

A Mom's Response to Hillary Clinton's Statement on Educating Kids With Disabilities

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“Every kid with a disability has the right to go to school,” Hillary Clinton said during her speech at the Democratic National Convention. “But how do you make an idea like that real? You do it step-by-step, year-by-year… sometimes even door-by-door.”

As a mom with five children who have spent time in the special education system of our county, I could not agree more with that statement. My children have varying needs from reading disorders, severe dyslexia, central auditory processing disorder, brain damage, anxiety, post-traumatic stress disorder (PTSD) dysgraphia, visual impairments, and cerebral palsy. I have spent hundreds of hours in IEP meetings and doing research.

Clinton’s message is inspiring and encouraging to those looking in from the outside. The reality is, equal opportunities for disabled children in the public school system has yet to actually happen in most places. Yes, they can go to school, but the struggle for parents now is what happens once they are there.

It’s wonderful that Clinton devoted time to demanding equal access to education for disabled children, but I wonder if she knows equal opportunity has yet to become a reality?

little boy who was denied special education services
My son, who was denied special education services.

I’ve sat in rooms with people who were all too eager to write my child off. I had a school psychologist, whose job on the IEP team is to be an advocate for the child, tell everyone, “We want to be careful not to expect much progress due to his lack of cognitive ability” while she refused to acknowledge he had a learning disability. She basically sat there and told everyone he was not intelligent enough to make any progress. My child was denied special education services and offered “a breakfast buddy so he doesn’t slip through the cracks.” So yes, he was allowed to go to school, but it did him precious little good when he wasn’t given the tools he needed to actually learn something from his time spent there.

I have had to fight for another one of my children to even be evaluated to receive speech services. The speech therapist just flat out refused to evaluate him when I requested it. I had to call the Board of Education and inform them of her denial to perform her job. Once he was evaluated he was found to have a severe issue. That same speech therapist told me his IEP would only reflect speech goals. She had two. Two goals for my son who could only be 50 percent understood. His teacher said he frequently was unable to make himself understood or understand what was being said to him. Two goals. That was it. The team would not put one additional thing in his IEP to help him in the classroom. He was denied further evaluations, denied accommodations, and denied further services.

I could tell 10 more stories like this. I had to take the fight to the school system just to get my children evaluated for what the Democratic presidential nominee says is a right. Every child has a right to a free and appropriate education.

I wonder how many people realize there is still so much work left to do here? We need to have a conversation about how many civil rights complaints are filed against school districts on the behalf of children with disabilities. I filed a complaint against our school district, which resulted in them having to work with the Department of Education Office of Civil Rights to reach a resolution because they were found not to be in compliance with the Federal Law that already exists. My children were provided compensatory services, due to their unlawful denials of evaluations and unlawful denials of eligibility for services. If I had not taken on the system and challenged what I saw going on, nothing would have changed.

I homeschool my children now because being the “whistleblower” in a small county is not a popular position to find yourself in. I also realize we have a long, long way to go to properly train educators and therapists about children with disabilities. Yes, they are allowed to go to school, but often they are not treated the same as their typical peers.

I want to see more discussion of this at the national level. I want politicians to realize that getting the children in the door was just the first step. I want parents of children with disabilities to stop being bullied by the system that is supposed to be helping their kids. I want federal and state dollars that come into a county meant for special education to actually be spent on special education. I want kids to qualify for special education based on their needs and not on caseload limits. I want to see kids receiving services based on their needs and not being told they don’t qualify because “an orthopedic impairment doesn’t quality a child for math intervention.”

This job of advocating is not done. These issues are not yet solved.

Let’s talk.

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The 'Rules of Engagement' When Asking About Someone's Disability

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Dalia in a wheelchair smiling
Dalia.

Years ago, before I had kids of my own, I was seated at a restaurant next to a mom and her son with special needs. The boy started to have a meltdown, screaming and physically lashing out at his mother. The mom steered her son outside, where he continued to thrash. Some of us in the restaurant stared; others looked away. Yet none of us went outside and asked the mom if we could help or brought her the jackets she’d left inside. I was in the “looking away” camp; I thought the polite thing to do was to pretend I didn’t notice.

And then there was the time I was in an elevator with my son, back before my own daughter was in a wheelchair, squeezed next to a mom and her blind son in a wheelchair. My son looked at the boy and asked, “What’s wrong with him?” I was mortified. “I’m so sorry,” I quickly said, apologizing on his behalf. She looked at my son and explained that her son had parts of his body that didn’t work like ours. Then she looked at me and said, “I’d much rather have someone ask me about him instead of just staring. But kids are the only ones who will do that.”

So which is it? Is it better to pretend not to notice anything is different, or should we come right out and ask? What do we really want?

My daughter Dalia is a beautiful girl, but she looks decidedly different from other people. For starters, there’s the wheelchair, the leg braces and the hearing aids. And it’s impossible not to notice that she has a large tube that comes out of her neck and is attached to a ventilator.

Dalia lived nine years fairly “normally” until her world was turned upside down after her tracheostomy. I wonder sometimes if it’s different for people who were born with severe medical complexity. Are they used to the stares and the whispers? Is it less painful? I doubt it…but I suppose they probably have more developed coping skills.

I’m not sitting in Dalia’s chair, but I’m about as close as you can get, so you’d think by now I’d have figured out which is better — the staring or the turning away.

Honestly? They both burn.

So what’s the alternative?

Dalia is aware of everything going on around her. That’s not obvious when you meet her, so I’m always impressed by people who address her normally – the ones who say hello to her directly or compliment her on her sparkly boots. And I’m grateful for those who look at me and smile instead of pretending not to see us. And then there are those who go a step further – the people who make sure to hold the door before they see me try to push it open with my foot as I steer the wheelchair, the ones who offer to help me carry a heavy load, when they see me precariously balancing the groceries in one hand and steering with the other.

But I know that’s a lot to expect.

And quite honestly, I don’t know that I would have fallen into that camp before I lived here. The evidence clearly points otherwise.

When I was in college, a much cooler, older guy brought his visiting sister to a basketball game. He introduced us, and told me upfront that she was deaf. I’d never met anybody who couldn’t hear before and it made me extremely nervous. Frankly, the fact that he was older and cooler was enough to make me nervous even without the deaf sister. So I asked what is probably the dumbest thing I’ve ever asked in my entire life: “Does she read braille?”

People who are different make us uncomfortable. No matter how open-minded and inclusive we like to think we are, we can’t help but stumble when someone’s diversity throws us off balance. But now I know that we can be curious without being rude and engage without being invasive. It’s not only that asking is usually better than staring, it’s also a way for people to learn about Dalia’s rare form of mitochondrial disease, myoclonus epilepsy with ragged-red fibers syndrome (MERFF). I welcome the chance to spread the word.

Dalia.
Dalia.

Not that I’ll always feel like talking about it, or even answer as graciously as I should. One time I met someone at a party with whom I quickly bonded over mutual admiration for each other’s dresses. Soon we were talking about our children, and she was looking to commiserate about her crazy schedule. She was trying to juggle baseball and cheerleading and lacrosse, or some such dilemma. Before long, it came out that Dalia was in a wheelchair, and she politely asked why. I gave her as much of an explanation as I felt like going into it, and tried to change the subject. She continued pushing, asking some very invasive questions. I pretended I had to go to the bathroom.

If it seems there’s no easy way to win, that engaging around all this is a crapshoot, you’re right.

But at the end of the day, I always appreciate the attempt.

You might get it wrong – need I remind you about my braille question?  But you’ll get the “A” for effort because I know what a delicate dance it all is.

Once, when we’d been in the ICU with Dalia for about three months, I took a break and went to my friend Lara’s in-home boutique for some shopping therapy. After about an hour of trying on clothes, we collapsed on the floor, surrounded by belts and purses and totally impractical shoes.

She looked at me with eyes full of love and said, “your life suuuuucks.”

I was grateful — grateful for the escape and the glass of wine she’d had waiting for me when I’d arrived and the hour of pretending life was “normal.” But mostly, I was grateful for the understanding that there was really nothing else to say at that point.

So maybe what we want is simply the recognition that what we’re going through is very, very hard.

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When My Students With Special Needs Comforted Me Through My Illness

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Throughout the three short years I’ve had of working with elementary special needs children, there have been several encounters that brought me to tears of joy. I feel like sharing three of these precious moments with you to let you know just how comforting a child that’s “different” really can be, even when they don’t know what you’re going through.

***

When Jesse hugged me after I was diagnosed with a chronic illness called systemic lupus in April of 2014.

Jesse had a traumatic brain injury. He also had a speech impairment and needed help in many different ways. I loved helping him. The day after I was officially diagnosed, I was sitting at the lunch table with Jesse in the cafeteria and he was playing with orange slices in his mouth. He put one in his mouth, like we all did when we were little to show the other person that our smile was in fact not teeth, but an orange’s skin. I giggled, but the smile didn’t reach my eyes. He looked at me for more than three seconds and said, “Nee hug.” He reached out his arms gesturing me to come to him, but it sounded more like, “Come he, come he.” I scooted towards him and hugged him, feeling like he became the adult and I was all of a sudden a child in desperate need of a hug. I instantly felt like everything was going to be OK. A child’s hug is everything.

***

When my hands were too sensitive to pain, and Aveah told me to sit on the swing, so she could push me instead.

Aveah has Down syndrome (DS) and she was probably the giggliest little girl I ever worked with. One day, I was barely able to push her on the swing due to the disease affecting my hands and wrists. She wanted me to stop; I thought maybe she was annoyed at how soft I was pushing. As I was expecting her to walk away, she told me to sit in her place and then started to push me. She didn’t speak, but she had a grin on her face the whole time. My joy couldn’t be self-contained and I started to laugh with joy. She inwardly let me know that even when you can’t do something well, there will always be someone there to help you.

***

When Colten touched my cheek and said, “You’re important,” while I was going through my first heartbreak. 

Colten is an autistic child I work with currently. He’s fun, caring and sweet as pie. In December of 2015, I felt my first heartbreak from a man I loved who broke me in every way, and it’s something I’ve had to heal from throughout this hectic year. One day was particularly hard for me while we were outside playing tag and monsters with the kids. I was running and laughing, catching kids in my arms, grateful for the slight wind that would dry the tears springing in my eyes. I slid down the slide and Colten was waiting for me at the bottom. I saw him and immediately reached out to tag him and said, “Got ya, Colten!”

Instead of running away from me, he looked down at me, touched my cheek and said, “You’re important.”

Stunned, I replied, “So are you, Colten.”

I sat there for a second trying to recall a movie where a woman went down a slide and if he was playing a character, but I couldn’t think of anything. Either way, it couldn’t have been more perfect. I’ll never forget those words.

Though every day is unpredictable working with special needs children, every day I gather special memories in my pocket. You see, special needs children are not so different after all. They feed you love, joy and laughter. They are there for you without having to know what you’re going through.

This is what makes them special — not because they have any kind of disability or special need, but because they are beautiful human beings who can feel the heart of another person in silent ways. That, my friends, is pretty special.

Follow this journey on One Mountain at a Time

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I'm a 29-Year-Old Woman Who Pees Standing Up

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I’m a 29-year-old woman and, for the past 17 years, I have urinated while standing up.

I’ll let that sink in a little bit.

OK, are you back now? You good?

I wasn’t born this way. For the first 12 years of my life I had urinary drainage tubes because my bladder did not form correctly and could not function. In 1999, between sixth and seventh grade, I had a long and complicated surgery that gave me a new manmade bladder, the ability to get rid of the tubes and just catheterize through my bellybutton. I felt like I had a whole new lease on life. It was fantastic and still is, with very few drawbacks, most of which got better and more manageable with time.

But there’s one drawback that has started getting worse, and I’m scared it will continue to escalate: the harassment I get in public bathrooms when women look under the stall door and see me standing up in front of the toilet.

I’ve been called all sorts of names in public restrooms over the years, most of which I’m not going to repeat here. I’ve been asked questions when I’ve come out of stalls after I’m done, some from curious people and some from not so curious people who are disgusted about what they think they saw and who they think I am.

The most infuriating one was maybe two years ago, when I came out of a bathroom stall at a local restaurant in my hometown in Missouri, completely oblivious to the mother and daughter in the facilities with me. As I moved to wash my hands, the mother pulled her daughter, who couldn’t have been a day over 10, close to her and told her to “never go near people like that.” When I asked what she meant, I was informed I was a pervert and to go back to the men’s restroom where I belong.

With transgender bathroom rights now being questioned, I know it’s going to get worse. The looks I used to get coming out of restroom stalls every six months or so are now happen nearly weekly, and it’s awkward and uncomfortable. I wish I could manage to avoid using public facilities, but I have to urinate every so many hours, so sometimes I have absolutely no choice.

Women like me aren’t transgender, but we often experience discrimination. Our medical conditions and situations take us out of the “normal and acceptable” bathroom behavior category. I don’t mean to compare my experience to transgender people because I know the actual transgender community faces different and complex obstacles. It’s a struggle that may never end, which is ridiculous. There’s so much more in this world to be upset about, so why are we so determined to focus all of our attention on exactly how and where people pee? I just don’t get it.

Image via Thinkstock.

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Why #MySisterMatters as Someone With a Disability

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What do you see when you picture a person with special needs? We see our sisters.

We are Kathleen Gaffney, Angelica Kolar and Emma Villarreal, and we all have sisters with severe disabilities. We continue to advocate for inclusive and accepting places for everyone, regardless of ability or disability. Growing up in an area obsessed with academic achievement and accomplishment reinforced the concept that many people are clueless about the realities of those with special needs. Our sisters are not inadequate; they are simply different.

Here are three things we’d like you to know:

1) Don’t stare. It is natural to stare at things that are unusual and out of the ordinary. However, staring only creates an environment that is uncomfortable for everyone. If you are curious, please ask polite questions. Asking questions intrinsically acknowledges the presence of those with special needs, and makes everybody involved feel more welcome and accepted.

2) Consider your lasting impact. Snide looks and muted laughter is commonplace for those with special needs. Their uncontrollable tics, irregular speech patterns, or lack of “typical” social skills make them the easiest of targets. Some people assume those with disabilities cannot comprehend they are being teased, and therefore conclude their cruel behavior is victimless. They do not view their actions as bullying, but think they are being funny in a manner that will not offend anyone. However, it is clear that those with severe special needs can grasp when they are being laughed at or mocked. We ask that you ponder your actions, and consider the effect you have on the lives of not only the people with special needs, but the siblings and companions who are always within earshot.

3) Don’t feel sorry for us. There are undeniable hardships that accompany having a sibling with special needs, however there are also indisputable upsides most people are blind to. Once people realize we have a sibling with special needs, many inherently feel sympathetic. Unfortunately, their attempts to accommodate our feelings only put us in a more awkward situation as it bolsters the notion that people with special needs need us feeling sorry for them. Our sisters are so much more than their disabilities and deserve the respect given to any other person.

Rather than believing stereotypes about the disabled community, we hope our personal perspectives will help open your hearts and minds about how having a sister like ours really is “special.”

A version of this post originally appeared here on the Magical Bridge

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Why Disability Representation in Politics Matters More Than Ever

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Representation matters. In this election year, how do we decide who to vote for? What issues are most important to us? I believe most of us seek a candidate and a party that represents us. We want to see ourselves reflected not just in the candidates, but the ordinary people who support and represent them at conventions, rallies, and commentaries. Yet for many people with disabilities, seeing someone on TV or at a political rally who looks like us, whose life is like ours, is an unusual event. We have rarely been given a voice in national politics. Until now.

When I was a little girl, I read a biography of Franklin Delano Roosevelt. I learned he had polio and that he was our first and thus far only President with a significant physical disability. I also learned he felt he had to hide the extent of his disability, using braces and carefully staged photo opportunities to conceal the fact that he couldn’t walk. He refused to be photographed in a wheelchair, to the point where very few photos of him using one survive. Although I understand his decision in the context of the times, it doesn’t exactly make me feel pride as a person with a disability. He was one of the strongest leaders in U.S. history, yet feared being perceived as weak because of stereotypes about disability.

Some years later, not long after the Americans With Disabilities Act became law, I visited Washington, D.C. I remember marveling that the bathrooms in the Senate office building were wheelchair accessible, since that was unusual at the time. I asked one of our tour guides about it, and she said it was because of Max Cleland, a senator who used a wheelchair due to injuries from the Vietnam War. I had never heard of him before, but I felt immediate solidarity and pride. If he could be a senator with a disability, I could accomplish anything I chose.

Many years after that, I watched Representative Tammy Duckworth giving a speech on TV, proudly striding across the stage on her prosthetic legs. Her words were powerful, and her personality was dynamic. She inspired me in that moment. She made me believe someone in our government might actually understand my life and care about me. She seemed like someone who might one day be President and do so while embracing her disability without shame.

Since then, politics have taken a turn for the nasty. We have a major party’s presidential nominee talking about building walls, banning people based on religion, and mocking people with disabilities on TV. The latter particularly offended me, especially since it didn’t get much attention in the news at first. The disability community was talking about it, but it seemed no one else cared. The Democratic National Convention showed me that’s not true.

Seeing Anastasia Somoza speak at the DNC had a profound impact on me. I felt a renewed sense of hope watching a woman only a few years younger than me, with the same disability, being treated as the professional she is and speaking at one of the most important events of our time. She helped me realize things are changing. Young people with disabilities have more opportunities than they did in the past. They have more opportunities than I had. But we also still have a long way to go.

Somoza’s speech has gone viral and is leading to interviews, appearances, and most importantly conversations about disability. We need to keep having those conversations. It’s easy for politicians to throw a big party for themselves and say all the things they believe, but how often do they actually accomplish what they promise to do? I appreciate the fact that the Democratic Party is including us and not mocking us, but realistically, that’s setting a pretty low bar. Basic respect should not be too much to ask for, though apparently this year, it is. But we need more.

Supporting people with disabilities is about more than including us in convention speeches. It’s about passing important laws like the Disability Integration Act to guarantee and improve in-home care services people like me need to live independently. It’s about changing laws that favor nursing homes over independent living, and ensuring a skilled workforce by guaranteeing high wages for home care workers.

It’s about expanding the ABLE Act, so it is open to all people with disabilities and allows us to save more money each year for important expenses, without risking our benefits.

It’s about fighting for jobs for people with disabilities; our unemployment rate is far worse than other groups we talk about more. It’s about reforming “work incentives” that are supposed to help people with disabilities to work and still receive essential health benefits like Medicare and in-home care, but actually make being employed overly complicated.

It’s about adding more teeth to the ADA and pursuing change in cities behind the times and still have many businesses with basic access barriers like a single step at an entrance.

It’s about creating more affordable housing and accessible apartments and homes, so people with disabilities can find a place to live and older adults can remain in their homes as they age.

It’s about investing in technologies of the future, such as self-driving cars, robotic limbs, and fully-featured powered wheelchairs, and ensuring they are affordable to people with disabilities.

It’s about reforming our justice system, where people with developmental and mental health disabilities are disproportionately harmed, and promoting education, treatment, and rehabilitation for nonviolent offenders.

It’s about recognizing that the disability rights struggle intersects with the struggles of other groups. Many people with disabilities, including Somoza, also belong to minority racial or ethnic groups. We are Christians and Jews and Muslims and atheists. Some of us are members of the LGBT community. When we have conversations and learn to understand each other, we’ll find out how much we have in common and realize we shouldn’t let people try to divide us.

As voters, we have to decide which party and candidate we feel will best accomplish these goals. For me, it’s the Democratic Party and Hillary Clinton. It certainly isn’t Donald Trump and his campaign of hate and divisiveness.

With that said, I acknowledge that many important disability rights laws, including the Americans With Disabilities Act, were bipartisan efforts. I will always be willing to have a dialogue with any respectful person, regardless of party affiliation. We can only accomplish change for people with disabilities if we work together.

Follow this journey on Free Wheelin’.
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