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.”
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.
It’s often said we are not given more than we can handle, or God gives special needs to special people. I’m going to call this one out and say that is crap.
It’s my son’s 8th birthday this weekend. This year has not been easy for him. Joel was born without an ear and is missing some of the bone structure within his face. He also is hearing and vision impaired. He looks different from other children, and unfortunately society is not always so accepting of looking different or acting differently.
I think a lot about the challenges of facial disfigurement: the surgeries, the stares, and comments. I think about him looking in the mirror everyday and thinking, maybe if I grow my hair a little longer, or wear a hat, or maybe just not go outside. I see him creeping closer to my side when we leave our small community because outside our town, people tend to stare. I notice his hesitations in new places with new people. His moves are calculated, and I note that he likes to have his “bad” side pointed towards me. I imagine he feels it’s less noticeable, and there is security in that. These subtle changes I am witnessing tell me he is slowly creeping towards feeling ashamed of his appearance and differences, and I am a bit lost. I have no prosaic statements or platitudes. No magical words can be the balm for his self doubt and fear.
This last Halloween, he talked in detail about the costume he wanted to wear. He wanted to be Darth Vader and wear a cool mask. It was an expensive costume, but I purchased it without hesitation. It was not lost on my husband and I that Joel could walk around “normal” for one day of the year. He could go out in public and there wouldn’t be sideways glances or small children pointing fingers. No mothers shushing their kids and whisking them away before they asked where his ear went.
And I wouldn’t be straining to hear their answers. I wouldn’t be hoping they would have a perfect answer of why God made him without an ear. I know it’s not because he is a special person who can handle more than others. Because honestly, who wants to hear and believe that?
I keep searching and listening because I want to know the answer to this very question. I have laid in his bed and stroked his jet black hair. I’ve marveled at the fine details of his lips and long eyelashes any woman would kill for. I have touched and know the structure of his face and wondered how to ease his fears.
I have listened without words or answers as he has asked me, “Why didn’t God give me an ear?” And my answer will never be because you are able to handle it. Because I know there will be moments he can’t handle it. There will be times he is angry and not feeling so special. There will days he stands in front of a mirror and sees himself as ugly and unlovable. And I’m not going to tell my son God created him this way because he is somehow superior in his coping abilities. No, I am not.
I have learned sometimes there are no answers, there is only listening. I am learning some answers while well intended, can hurt more than help. Joel needs me to show him his facial difference is only one small element of who he is. Most importantly, Joel needs to know he is not an accident or any less than he should be. We all have our blemishes, imperfections, and problems. As we celebrate my son’s birthday, I will look upon him and see beauty because I will see him for what he has, not for what is missing. I will see a child whose parts inside and out have been mended together to create a beautiful 8-year-old boy.
As of March 2016, the unemployment rate in the US for individuals with disabilities was 10.8 percent, while the unemployment rate for people without disabilities was 4.9 percent. Furthermore, only 19.9 percent of people with disabilities participated in the labor force, as opposed to 68.6 percent of people without disabilities. (Source: United States Department of Labor, Office of Disability Employment Policy.)
As the managing director of Tangram Business Resourcing, a disability-inclusion consulting arm of disability service provider Tangram, I consider myself on the front lines of this phenomenon. I wonder — why aren’t more people talking about this? If this were any other group of people, say women or people of color, it would certainly be a major topic of conversation.
While we have undoubtedly seen an uptick in studies on disability inclusion and its benefits for businesses, the numbers above show that there is still work to be done.
As someone who works with both individuals with disabilities and businesses, I have a unique perspective on the current state of employment for people with disabilities. To my mind, there are two sets of barriers that prevent qualified individuals with disabilities from finding competitive employment — real barriers and perceived barriers.
One real barrier that I encounter frequently is transportation. A person might be a great match for an opening at Business A, but what happens if the person relies on public transportation and the job isn’t near a bus stop or on a subway line? Some possible solutions might include carpooling or rideshare services—is there a coworker that lives near the person and could provide transportation, or is the person able to use a service like Uber or Lyft? Is there a service available specifically for people with disabilities? Some cities may have a service associated with their public transportation that allows individuals with disabilities to schedule rides and pay reduced fares.
Additionally, people with disabilities may lack the resources to get connected to employment, or may not have the type of support they need to be successful in their jobs. That is why Tangram launched Workforce Accelerator, a job-matching database specifically for individuals with disabilities and veterans, and why we work closely with businesses to help them recruit, hire, and retain qualified employees with disabilities.
In providing consultation and training to businesses on disability inclusion, we find that their barriers to hiring a more diverse workforce are mostly perceived. Many businesses believe that hiring people with disabilities is a charitable thing to do, but that it doesn’t have any business advantages. Businesses are often worried about the cost of accommodations and training, and they have fears and stigmas about hiring people with disabilities, believing that the individuals they hire will have more absences, will cause insurance costs to increase, and will be less productive. We also frequently encounter preconceived notions about what constitutes a disability, with many businesses believing that all disabilities are visible. The reality is that there is a wide range of disabilities — some visible, some invisible, some physical, some intellectual.
Fortunately, several studies have shown that hiring qualified individuals with disabilities is actually very beneficial for businesses in a variety of ways. A study of Walgreens’ distribution centers by the American Society of Safety Engineers found that workers with disabilities had a turnover rate 48 percent lower than that of the non-disabled population, with medical costs 67 percent lower and time-off expenses 73 percent lower.
The most common response I get from businesses who have hired individuals with disabilities is that they are highly satisfied by these hires, realizing that this is an untapped workforce proven to have fewer absences, lower turnover, and brand loyalty. Most businesses just need the proper education, training, and support to launch successful disability inclusion initiatives. If a business has built a culture of inclusion with help from consultants like Tangram Business Resourcing, they are sure to succeed and reap the benefits of an inclusive workforce.
Hiring people with disabilities isn’t just a nice thing to do — it’s good for business and for communities, building more diversity in our workplaces and creating more tax-paying citizens and fewer individuals who are reliant on government benefits.
I’m confident that we can find solutions to the barriers that exist for people with disabilities by providing training to businesses and individuals and creating conversation around this important topic.
In general, I loved the movie “Finding Dory.” In fact, I thought it mostly delivered a great message about disability inclusion. A big part of the story centers on how, despite her cognitive disability, Dory is able to successfully manage the world and find love and acceptance. Unfortunately, this beautiful message of inclusion and empowerment gets muddied while it stands in stark contrast to the included “Gerald” plot line, which is mean-spirited, heartbreaking, and completely tactless.
In case you missed Finding Dory or blocked the sea lion scenes out of your memory as I wish I could, Gerald is a sea lion who appears pretty clearly to have some sort of developmental disability. His goal in life is to join Fluke and Rudder, two seemingly neurotypical seals, on the warm sunny rock they bask on throughout the day. With his wide-set eyes, prominent overbite, exaggerated brow, friendly-but-naive disposition, and non-verbal role in an otherwise very talkative ocean, it seems to me that this character was intended to represent someone with a developmental disability.
There are various scenes in the movie that include this trio, all of them with the “punchline” being that Fluke and Rudder harshly yell at Gerald to get off of their rock until he sadly sinks into the sea. At one point, Gerald has finally found a spot of joy; he’s got a bucket that he’s happily playing with. Fluke and Rudder call him over and offer him a trade — if he lets them have his new bucket, he can join them up on the rock. Eager to finally be included, he happily hands over his bucket to his “friends” who now seem to accept him. Fluke and Rudder allow Gerald a microsecond on the rock, then laugh and pull their trademark “Off off off off!” move, again shoving him sadly into the sea. His expression as he falls is the saddest thing I’ve seen in a Pixar movie — and I watched Toy Story 3.
The most depressing part of this plot line is that Gerald never really gets his day. Fluke and Rudder never accept him or change their behavior toward him, but are still generally represented as “good guys” in the movie. There’s no lesson learned, no apology, no moment of realization. The story doesn’t address the way they bully Gerald and exploit his disability as a bad thing. It’s just a bitter punchline they hammer home over and over again. Gerald naively hopes for inclusion, and Fluke and Rudder repeatedly crush that dream by being cruel to him. That’s the whole joke.
Call me a party-pooper, but I’m not laughing. There are a few things this joke relies on for its humor. The first is that Gerald is “funny-looking” and different. If they had animated Gerald as super cute with big oversized eyes and chubby cheeks à la baby Dory, no one would have laughed at the bullies picking on him. Everyone would have said, “What was with that? That was horrible!” But hey, picking on people who are different is hilarious, right? The second thing the joke relies on is how funny it is when Fluke and Rudder team up to loudly shoo him away. It’s a familiar motif — a spin-off of the famous “Mine! Mine! Mine!” from “Finding Nemo,” which was irresistibly catchy. Sadly, so is this — and it builds a perfect stencil for kids to use when teaming up to exclude kids from the jungle gym at the playground.
With this film having disability empowerment as a major theme, why on Earth would the editors include this plot line? Who approved these storyboards? It’s a moot point now, really. At this point, the damage is done. The film is out there. The most we can hope for is that parents pick up where Disney left off to use the scene as a teachable moment.
If you took your kids to see “Finding Dory,” talk to them. Ask them how they felt about Fluke and Rudder. Ask them how they thought Gerald felt. Ask them what Fluke and Rudder should have done instead. Disney and Pixar made a big misstep here, but let’s turn it into something positive by talking to our kids about bullying — especially when someone is a little bit different from us.
The boys and I were at the grocery store this afternoon, and as usual my older son excitedly pushed his brother around and caught the eyes of a few shoppers. There were two in particular who were extra curious, a boy and girl close to the ages 3 and 6. The little girl watched my little guy being pushed with curiosity as we zoomed by her, grabbing a pineapple and plums.
I heard “Mom, that looks like a wheelchair” coming from her as they began to pass us on the other side by the butter lettuce and bell peppers.
What came next from mom surprised me. ”Shhh… just keep walking.”
Just keep walking? This was most definitely not what I expected, and I immediately felt a twinge of sadness in my chest.
I wanted to turn around and say this:
It’s OK if she’s curious. It’s OK if she wants to know why he isn’t walking. It’s all right if she talks to him; in fact it’s welcome. He’s a little boy, just like your little boy. He’s sweet and charming with the most adorable grin. He loves Bubble Guppies and pulling his big brother’s hair. Please don’t tell your children to just keep walking. With that one sentence, you just taught your daughter to ignore someone with a disability, to ignore someone who is different. You taught her not to see my son.
Now I don’t know if Mom helped explain his need for a wheelchair on their way out of the store. I can only hope she did. I can only hope she assured her children that people come with many different abilities, and we can embrace each others’ differences.
Parents, please teach your children that being different is OK, and it’s more than OK to ask questions.
Help your kids make sense of it all, because if you don’t, who will? They need you to help them understand.
If you don’t have the answers, all you need to say is “maybe you should talk to him?” We all know that moms love to talk about their kids, and as a mom of a child with special needs, I won’t pass up a chance to advocate and teach others. I don’t have all the answers, but I will be more than happy to try to answer any questions your kids may have.
Please encourage them to walk up to us and have a chat.
Teach them acceptance, not ignorance.
Show them love, not avoidance.
And most of all, don’t tell your kids to simply keep on walking with their questions swimming in their heads.
Start the conversation, and please let them see my son.