Betsy DeVos at confirmation hearing for Department of Education Secretary

To Betsy DeVos, From a Special Needs Mom Filled With Hope

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Ms. DeVos, I hear you are the subject of a lot of controversy. To see my newsfeed, one would think you have already committed a crime! My homeschooling friends have fears about you might do to their homeschooling freedoms, and my public school friends have fears about what you might do to their funding.

Let me tell you why I’m the one filled with hope.

I am a mom to seven kids. Four of my children came to us having suffered trauma and loss early in life. Either as a result of their difficult beginnings or biology, all four have dyslexia and three have auditory processing disorder. Out of my seven children, two are neurotypical. At the time we made the decision to homeschool, five of my children were on IEPs and four were also in the ESL program at our local public school. This was only after I obtained an advocate, filed complaints with the Department of Justice and Department of Education over the school’s refusal to evaluate my children for services or provide an adequate ESL program. I begged and pleaded with the school district to please evaluate my children for special education and heard every excuse under the sun as to why they didn’t think it was a good idea.

I experienced one heavily educated and profoundly qualified administrator sent from Central Office to an eligibility meeting who told me, “We want to make sure we aren’t violating your son’s civil rights by finding him eligible for special education when he really shouldn’t qualify.” Yes, I had IDEA thrown in my face at my son’s eligibility meeting where my social worker and I sat in dismay as he was found ineligible due to “low cognitive ability.” The school psychologist said, “We want to be careful not to set goals where we expect much progress. Given his ability, it’s not fair to expect him to really progress.” My son has dyslexia, auditory processing disorder, is a non-native English speaker, and experienced trauma early in his life. Yet the people who should have been advocating to help him overcome those struggles decided that he was simply just not capable of progress. Having “borderline cognitive ability” made him ineligible for services due to the lack of discrepancy in his poor academic scores.

This scenario played out over and over with my children. “Borderline cognitive ability” is the keynote to a speech against qualifying for special education. I fought for them to be fairly evaluated a second time and brought lawyers to their next eligibility meetings. The resulting IEPs were literally forged with my dogged determination and tears.

Imagine the feeling, then, of thinking you had finally figured out how to win the game, but suddenly the rules were changed by the other players and they refused to share the playbook. I thought IDEA was the standard by which children with disabilities were identified and helped. Instead my experience was that it has become the screen used to keep qualification for services at a minimum, and the filter for keeping specific programs out of reach for children who need them. I believe a system where adequate progress is determined by those providing the services, not by real life results of those receiving them, is a system set up to fail the very ones it’s meant to help.

I had to watch my kids struggle both before I was able to have them properly evaluated, and then continue to watch in horror while their IEPs were not complied with and needed services were not provided all in the name of “adequate progress.” I was on the phone, email and social media every single day trying to find someone, somewhere who cared enough to help me change the way things were done.

Ultimately there was no one willing to stand with me. Yes, our community could have risen up and demanded better, but that’s the thing about knowing everyone in a small town. People were scared of losing their jobs or their standing in the community for exposing how a school system can use the legal language in IDEA as a screening tool to actually prevent children from receiving services. Yes. You read that right.

As a mother, I had to choose between taking on a corrupted system or focusing my time and energy on my children at home.

It’s been two years since we pulled the kids out, and my only regret about that decision is that I did not do it sooner. It has been a hard pill to swallow accepting that the school received thousands of federal dollars for each of my children identified as having a disability while refusing to provide necessary services under federal law. As a homeschooling parent I receive exactly $0 to help with resources or services for education. We cannot even take off expenses on our taxes.

So you see, Ms. DeVos, I have already lived this nightmare people speak of fearing. My children were denied what they needed, and to this day I am not sure why our community did not rally for us. I can speak from experience that it’s never easy to protest against “the way it’s always been.”

What I can tell you is that the last thing I wanted to see right now was one more overly qualified and richly experienced educator placed in a position to keep things “the way they are.”

You’ve made mistakes, but I hope you have learned greatly from them. I hope you have learned what works and what doesn’t so you can work to ensure a higher quality education for all of our children. Why else would a person want a position such as the one you have just been confirmed for?

Please know that for me, a school choice voucher is what I’ve been praying for. It’s literally the only way we can possibly manage to provide the resources our children need. In my experience, I can educate all of them, at home, for far less than the public school was receiving and do a far better job. I’m not sure if that’s a kudos to me or a sad revelation of our school system. Whichever it is, Ms. DeVos, I want you to know that as a special needs mom, I am sincerely hoping you and the programs you implement are a great success because my children deserved better.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

Follow this journey on The Johnson Journals.

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Photo source: C-SPAN video

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The Assumptions That Make Me Feel 'Other' as a Person With a Disability

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I’m still shuddering from a conversation I had this week.

“When people see you, they see your wheelchair and not you as a woman,” an acquaintance, who I’d recently met and who does not have disabilities herself, said to me. “Around you, people must feel awkward, uncomfortable, and will try to give you a wide berth. They will avoid eye contact with you and hurry on by as if you are invisible. Given you communicate with a writing board, they will also assume you are…” her voice trailed off as she twirled her finger beside her head to give the universally disrespectful symbol for someone who has cognitive disabilities or mental health struggles. Her expression conveyed this perception would be most terrible.

While the acquaintance was full of righteous anger on my behalf against the injustices she assumed people must feel and perpetrate towards me, her words hurt. In my immediate family, two people have cognitive disabilities, my beloved grandma has dementia, and others have fought brave battles against mental health conditions. These are the people I most love in this world. I’m still adjusting to what it means to have had my own disabilities become much more visible over the past year, and so her words also left me shaken, doubting myself, and confused about the motives of others.

One of the things I value most in this world is the ability to connect with people and form genuine, warm relationships with those I believe God has brought across my path and into my life. It hurts my heart to think something as superficial as a piece of metal on wheels that carts me around could get in the way of that. Fortunately, as I look back over the past year, I can recall very few incidents of judgment, compared to time after time after time of genuine kindness, acceptance, and love from the people in my life. I have some great people in my life who have shown me acceptance based on who I am.

Strangers sometimes do take a while to figure out how to relate to and communicate with me, but that could be just as much from the fact that I wheel to the beat of my own drummer. More often than not, after a few moments of conversing with someone new, I sense that the foundational blocks of a relationship have begun construction, in much the way it was in the days before my disabilities were visible and easily apparent.

While I am grateful that my own experiences have largely been positive and contrary to my acquaintance’s negative assumptions, it was an eye-opener for me.  In rapid succession, I then stumbled across two statements this week that further opened my eyes and showed me how education is still needed. The first was by a well-known contemplative author whose work I have previously enjoyed:

“People with disabilities “are considered marginal in our society. They don’t make money; they are not productive and all of that, but they are the real poor. Jesus said, ‘Blessed are the poor.’ Jesus doesn’t say, ‘Blessed are those who care for the poor.’ Jesus doesn’t say, ‘Blessed are those who help the poor.’ He says, ‘Blessed are the poor.’ That means the blessing of God is right there in their vulnerability, in their weakness, and that is what I experience.”- Henri Nouwen

When we group society into one collective thought group that considers people with disabilities as marginal, we close the door to free thought as well as grace-filled acceptance of people despite any abilities or disabilities, weaknesses or strengths they may have to offer as a person. We begin to think in the opposite manner from everyone belonging and having something to offer (beyond offering a “blessing” to others).

This quote makes stigmatizing assumptions that a person with a disability is “less than” anyone else and has less to contribute. I don’t know anyone who wants to be seen as marginal or “the poor.” Further, to state that people with disabilities do not make money or can’t be otherwise “productive” is certainly not the case for all people who have disabilities. There are plenty of people who contribute highly in life, regardless of their disability. Many people are not poor financially, nor lacking in social connections. This is the expectation I have for both of my kids, who have plenty of abilities to contribute to society as a whole. Likewise, many people with and without disabilities are not able to work or earn money.

However, I’ve never met a person, disabled or otherwise, who didn’t contribute in some way to the world around them. I used to work in group homes and schools with individuals with extremely complex physical and cognitive disabilities, and some of these people contributed to my life in such meaningful ways that I still think of them with regularity many years later.

From the bonds we form with each other, to the love in our hearts, to the fact that as living and breathing humans we reflect a sacred image through our very humanity; we all have a place in the world. In terms of blessings… I do hope God’s blessing is on me, but I want it not to be assumed automatically just because I have disabilities. I’d prefer someone dislike me for my stubbornness or the paralyzing shyness that can strike at the most inopportune of times, than like me because my wheelchair is seen as a marginalized weakness that brings blessings.

The second quote, by Michael W. Higgins, does the opposite of “marginalizing.”

“The people who are disabled are our reward.  And they remind us of the deeper truths, the truths that sustain us as a culture, humanize and enoble us…..Those who are intellectually and physically challenged have no time for illusions; they force us to confront the reality, not the false dreamscape of humanness.  They are the true sentinels of our larger hope…

There is something very particular in their kindness, in their afflictions… a great and liberating mystery to touch the bodies of of those who couldn’t communicate verbally.  In fact it was unnecessary to do so; their bodies proclaimed ‘love me.’  Such a communication arose naturally from their very depths of who they are — they are their bodies, broken, ruptured, fragile, incomplete. But theirs are wrapped in love… The tenderness of the disabled heals us, breaks us free…”

On the surface, this may sound like kindness. But delve into the meaning and it becomes clear that to view a person as a reward to “us” because of “their” innate humanity or kindness in “affliction” is to create an “us versus other” world. To see a person as a sentinels of “our larger hope” solely because they have a disability is to patronizingly give that person a wide berth that prevents seeing him or her as a human being. It takes courage sometimes to reach out to each other, despite any differences we have.

My own experience being in a wheelchair has opened my eyes to the fact that it is not our differences that separate one from another, but our fear of those differences. However, when we look into our hearts, we discover we’re all not so different after all. I believe inside of every heart is a desire to be seen as we are, to be accepted for who we are, to know we matter, and to be deeply loved.

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Why Did So Many 2017 Super Bowl 'Diversity' Ads Exclude People With Disabilities?

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While many commercials during the 2017 Super Bowl focused on diversity and inclusion, the majority did not include people with disabilities.

Coca-Cola reran an ad from the 2014 Super Bowl. “It’s Beautiful” featuring people of different backgrounds singing “America, The Beautiful” in different languages.

Likewise, Airbnb’s “We Accept” also showcased people of a variety of backgrounds. The ad is set to music with text laid over close-ups of people’s faces that read: “We believe no matter who you are, where you’re from, who you love, or who you worship, we all belong. The world is more beautiful the more you accept.” The ad ended with the hashtag #WeAccept, which went viral by halftime.

Google’s “Google Home” commercial included multiple minority groups by showing homes with rainbow pride flags and mezuzahs and people from all races cooking, eating, dancing and enjoying life.

Yet all three of these ads, which promoted inclusion of diverse people, failed to include people with disabilities, which is the largest minority in America, with almost one-in-five Americans having a disability. The disability community often is forgotten in diversity conversations in Hollywood and elsewhere.

According to GLAAD, fewer than two percent of scripted television characters (15) have disabilities.

When we tweeted @CocaCola about their ad asking where were the people with disabilities, the account responded: “While we cannot meaningfully represent every group in 1 minute, we value everyone and everything they bring to our country.”

“Large companies like Coca-Cola, Airbnb and Google Home have the opportunity to challenge this and ensure their television advertisements include people with disabilities,” RespectAbility President Jennifer Laszlo Mizrahi said. “How great would it be if the next time these companies created a commercial if they made it a priority to ensure that the diversity of the roles, including people with disabilities, reflected society at large?”

But two other companies succeeded in disability inclusion. In an ad that poked fun at President Trump’s hair, It’s a 10 Hair Care’s commercial featured a wide variety of individuals, including a man in a wheelchair – bodybuilder, model, dancer and entrepreneur Adelfo Cerame Jr.

Cerame, a T-12 paraplegic following a car accident, is a competitive wheelchair bodybuilder. He also has some awesome hair, which seemed perfect for the ad.

Another ad by the American Petroleum Institute, which many deemed controversial, featured uses for petroleum other than gas – like paint, heart valves and lipstick. The ad also included Angel Giuffria shooting a bow and arrow with her prosthetic arm and hand.

Giuffria, who acted in the “Hunger Games” series, first thought her bionic arm could be a hindrance to her goal of being an actress, but since getting an advanced prosthetic arm, she has learned to embrace it.

“When it comes to Hollywood and big budget movies, they have a specific vision in their heads,” she said in a June 2015 interview. “So at first I always thought it was a hindrance, but since I got this arm I kind of decided that I was going to embrace it. The other hand I had before this it was not as much fun to wear, and this one is fun to wear. I’ve actually gotten great responses, and because of that I booked “The Accountant” and I’ve been contacted to audition for several other things. I just feel like my arm is actually opening doors where I was concerned were closed to me before.”

The 2015 Super Bowl was an awesome year for television ads including disability, thanks to remarkable personal statements in television ads by football legends Derrick Coleman and Steve Gleason.

Coleman, who is deaf, told his story in first-person for Duracell, while Gleason was featured in an ad for Microsoft. These ads show that wherever there is a disability, there also is ability. Coleman and Gleason, both in real life and their ads, showed that their disability is not a disqualifer for equal and successful participation in life.

What people see and hear impacts what they think and feel – and what they think and feel has life and death consequences. People with disabilities lack access to healthcare, education and employment opportunities. Medical professionals withhold treatments due to valuing people with disabilities less than those without disabilities. This ranges from OB/GYNs recommending abortions for fetuses with non-fatal prenatally diagnosed conditions to orthodontists not placing braces because of prejudice.

A major Princeton study showed that people with disabilities are seen as warm, not competent. Similarly, a Cornell Hospitality Quarterly study revealed companies are concerned that people with disabilities could not do the required work. Thus, employers who are largely impacted by what they see out of Hollywood do not want to give people with disabilities a chance.

“An increase in positive, diverse and accurate portrayals of people with disabilities on television and film can significantly help end stigmas that limit their health and lives,” Mizrahi added. “Changing hearts, minds and behaviors takes great messages, delivery systems and message repetition. Diversity and inclusion processes also are needed inside companies so that diversity and accurate portrayals become natural and consistent.”

Learn more at RespectAbility.

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To Betsy DeVos, From a Public School Educator and Mom

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Dear Ms. DeVos,

My husband and I are public school educators of 12 years. Our son will soon be turning 3 and entering the public school system. I have watched the hearings where you seemed not to understand questions being asked. I have watched the hearings where you felt the rights of students were “best left to the states.” I am disappointed that the person in charge of our education system has no comments or in my opinion no appropriate comments for the important questions asked of her.

The words written by our forefathers in the Declaration of Independence are the same rights you feel are “best left up to the states.” They stated “that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” All people, not just some people, and it should be taken very seriously.

The fight, Ms. DeVos, does not end with your confirmation. The fight for my son, who happens to have Down syndrome, to have an equal and appropriate education with his peers, no strings attached, will not be infringed upon. The fight for all my students to receive the same education will not cease. I refer to all students as “my” in this sentence because it is the responsibility of our nation to educate every individual, regardless of status. This is what highly qualified teachers believe; do you believe the same or is that matter best left up to the states as well?

Although I do not have millions of dollars to help my cause and be elected into a position where I can benefit these people, I will not be silenced. I will be standing with the other teachers, parents and grandparents, fighting for what’s right for all children. We will respectfully demand that our voices, the educators and parents who work tirelessly to help the future generations of this country, are heard. I beg that you listen to us. We have dedicated our lives to the education of children. We are passionate about it. We will do what it takes to ensure the promise of a brighter future. I sincerely ask, will you?

I anxiously wait to see what our future in education holds and look forward to your response.

Sincerely,
Larkin O’Leary
a.k.a James’s mom
a.k.a Mrs. O’Leary

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

We want to hear your story. Become a Mighty contributor here.

Photo source: C-SPAN video

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15 Things People Receiving Disability Benefits Wish Others Would Stop Saying

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The myths and misconceptions about people who receive disability benefits are sadly all too common. Many people believe those who receive disability benefits are “scamming the system” and that it “must be nice to not have to work,” when in reality, the decision to apply for disability benefits is a complex one, and life afterwards could hardly be called “easy.” 

We asked our disabled Mighty community what they wish people would stop saying about disability benefits. It’s time to put an end to these hurtful and offensive statements, and for people to start realizing that there is a story behind each person who receives disability benefits.

Here’s what the community told us:

1. “’It must be nice to not have to work. And sit home and draw a check.’ What they don’t realize is that I have a college degree and had to quit a medical office job after six years (a job that I loved by the way) and file for disability. My income is now one third of what I originally made while working. I would much rather have my health and job back.”

2. “’You must be cheating the system if you work and get disability benefits.’ Not true. I work almost full-time and keep my SSDI using various work incentives including impairment-related work expenses and an ABLE account.”

3. “I hate the assumption that I can spend it on whatever I want when actually I need it for special equipment like my wheelchair.”

4. “’I don’t want my taxes to pay for lazy people not to have to work.’ It’s usually followed up by a quick, ‘Oh, but I don’t mean that about you! Just the other people scamming the system!’ But it hurts to know they assume anyone on disability must be lazy and scamming.”

5. “I was checking out at the grocery store and pulled my food stamp card out. A man about three people back yelled, ‘Glad I just worked a full day to pay for your food!’ I was mortified! I turned around and said, ‘Excuse me. You don’t know my story.’”

6. “’So-and-so resisted going on disability and kept their dignity.’ Like making the decision to go on disability has anything to do with one’s dignity.”

7. “’How come you can’t work but you went out with friends last week?’ As if a two-hour meal in pain for a friend’s birthday means you can cope with traveling five days a week, eight hours a day for a job, even though it’s the first time you’ve been out socially in months.”

8. “My favorite is when people compare me to other people who were turned down, and saying ‘Their illness is worse than yours, so how did you manage to get it?’ I can’t answer that! I’m not in charge of the system.”

9. “’At least you don’t have to worry about money. You have it easier because of your disabilities.’ I was told this by someone who gets paid more money than I get on disability money… I do have to worry about money because I have to pay for things like taxis which are quite expensive. I also need money for mobility scooter hire so I can get out an about to do grocery shopping and hospital appointments. If anything disabled people worry more about money.”

10. “’Are you sure you need it?’ Am I sure what? Hell yes I am sure. Mind your business.”

11. “’Must be nice to get handouts.’ This isn’t a handout. I paid my National Insurance like everyone else. It just so happens that it’s only a few years into my working life that I have become disabled, but that’s why we have it!”

12. “’But there’s nothing in your diagnosis about your fingers, so there must be a job you can do,’ and ‘Don’t you get bored doing nothing all day?’ Yes, yes I do. If I had a choice do you really think I would be in this position.”

13. “My favorite was, ‘I go to work every day so it means that I am paying for you to be off sick.’ Actually no you are not, because I have paid my taxes and insurances for 20 years and that is what is paying for me, thank you very much!”

14. “’You could work if you just pushed yourself a bit, even if it’s part time. I know it must be lovely not having to work, but it will do you good to have something else to focus on rather than sitting around all day focusing on how poorly you are.’”

15. “’Why are you complaining? You’re, like, always on vacation.’ Yes being in 24/7 pain is just like a vacation.”

What do you wish people would stop saying about disability benefits? Share in the comments below.



15 Things People Receiving Disability Benefits Wish Others Would Stop Saying
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Special Needs Families React to Betsy DeVos Being Confirmed Education Secretary

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On Tuesday, the Senate voted to confirm Betsy DeVos as Secretary of the Department of Education. DeVos had a contentious nomination process with many parents, educators and democratic lawmakers opposing her based on her lack of education credentials and limited understanding of federal protections for students with disabilities.

Tuesday’s final Senate vote was tied 50-50, with Vice President Mike Pence casting a tie-breaking vote in favor of DeVos. As news of DeVos’ confirmation spread, parents of children with disabilities, students, educators and families took to social media to share their thoughts.

Here’s what they have to say:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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