Stack of files on desk.

To the Paper-Pushers Who Denied My Social Security Disability Benefits

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When I first wrote about applying for disability, I mentioned a standard practice of the Social Security Administration: default semi-automatic denials of disability claims. On average, it takes 3-5 years for someone who is disabled to be awarded benefits. This routine dragging out of claims affects me and many others financially and emotionally and also feels immoral and unjust. The disability process has been intentionally crafted to be as difficult as possible to navigate and even survive, yet this program was founded for the purpose of helping people live better lives.

The following letter is my formal response to a denial of my first claim. To be clear, many claims are denied twice before moving to a hearing with a judge. I am sharing this publicly because I want to expose the vulnerability so many go through as they seek disability – as they seek resources so they might live longer, healthier, fuller lives in the face of significant barriers to a substantial work-life.

Before I share my letter, here are some reasons I was told I am not disabled under the rules of the Social Security Administration:

“Although you experience back pain… [and] have a history of neuropathy, which is limiting, the records show that you are able to walk and move about in a satisfactory manner and that your condition imposes no major limitation upon your ability to function… Although you indicate you have insomnia, this is not disabling. …you are HSV-2 positive; however, at this time you have no significant complications of HSV-2. While you experience some occasional fatigue, you are able to get about and perform work activities.”

“Though you may experience symptoms of mental problems, your records show that you are able to think, communicate, and act in your own interest. …you are able to adjust to ordinary emotional stresses and get along with others, as well as to do your usual activities and to remember and follow basic instructions.”

“…it is determined that you should be able to…frequently lift 10 pounds, stand and walk up to 6 hours in a normal 8 hour work day, and sit for about 6 hours in a normal work day. …you would be restricted from occasional climbing ropes…You would also be restricted from frequent climbing of ramps and stairs…”

“Based on psychiatric evidence… you have the ability to maintain the pace, persistence, and concentration needed to perform unskilled work over a forty hour week and adapt to changes in routine.”

Even though I expected this denial, my initial response to the letter was, “You don’t know me!” I spent a few weeks beating my pillow, overwhelmingly frustrated and baffled that someone who has never seen me face to face could judge me with such confidence, before sitting down to write this letter.

July 20, 2016

Dear Social Security Administration Disability Determination Analyst(s),

I would like to share what it is like to live in my body. I respectfully ask that you read this statement and consider it an equal addition to my medical records. I want you to see me as a whole person while you decide what you truly believe benefits my life.

I remember what it felt like to push myself beyond my limits by choice. I was a college soccer player, a marathon runner, and a professional mover; but this was years ago. Now, because of multiple debilitating diseases and conditions I am forced beyond my limits just to survive each day. I have watched as my ability to work has fallen from 50+ to 30 to 20 to 15 to 5 hours or less per week. I am no longer even able to care for myself at home. This is the last direction I ever imagined my life would go.

I do not simply experience back pain. I endure constant, excruciating, debilitating pain in my back, SI joints, shoulders, hands, fingers, and knees. While I am ambulatory, I am unable to stand for longer than 7-10 minutes without agony and using a cane for support. On rare good days I am able to walk several blocks or even ride my bike, but what I do outside my home is an accumulation of all the energy I can summon over several days. Most people do not see when I return home and I am in agony, doing everything I can to be comfortable and to recover. I was once a from-scratch-meal-or-bust kind of person; now I cannot stand long enough without pain to wait for a four-minute microwave meal. My dishes remain dirty, dirt and detritus covers my floors, and a mustering load of laundry sits forgotten in the washing machine for days. This is not laziness; I cannot wash, clean, cook, fold when every moment is pain and fatigue and brain fog. It is impossible to imagine transferring these inabilities to any semblance of a sustainable work-life.

Pain in my hands and fingers feels like freshly broken bones. Handshakes cause me to wince. I use compression gloves, a wrist brace (that I can’t afford), and other accommodations to help open a dryer door, chop vegetables, turn a handle, write with a pen, and more – and even then with tearful pain. Pain in my back and knees makes me unable to sit longer than 5-10 minutes without needing to constantly take pain medication, massage myself, shift my weight, get up to stretch, and elevate my legs horizontal to the floor. I used to sit in front of a computer all day without moving, now I have extreme pain if I sit for a short time.

Extreme fatigue, post-traumatic stress disorder, and major depressive disorder (recurrent, severe) keep me from regular activity that is physically or mentally demanding, including interacting with coworkers, customers, bosses, and the general public. I am unable to sustain repetitive interactions and duties without having severe physical and mental consequences both professionally and personally.

I am scared of walking down a certain street or entering a certain store because I’ve seen my abusive ex there multiple times; just being in these places triggers an impulse to hide, a tensing of my whole body, a racing pulse, and intense and blinding flashbacks. My fractured, medicated sleep is traumatized with nightmares of my abusive ex, my best friend who died under extreme trauma, my grandfather on his deathbed, and a broken childhood. Many mornings I “wake up” after having tried for 10 hours to fall asleep. Fatigue from lack of restful sleep affects my ability to function, especially my memory: I walk into the bathroom and forget to brush my teeth. I open my front door and forget I was going outside. I lock my keys in my apartment multiple times a month. I hate myself for these things.

It was mentioned in the denial letter that my insomnia is not disabling. It could be claimed that any one of my disabling conditions is not disabling on its own, but my numerous comorbidities put together create a compromised reality for me. I endure constant pain, fatigue, and emotional stress from ankylosing spondylitis; anxiety, flashbacks, panic and emotional and mental duress from PTSD and major depressive disorder; uncharacteristic pain and prolonged outbreaks from genital herpes (HSVII) because of my weakened immune system; on top of insomnia and other conditions.

These examples of my reality do not depict someone who is able to work substantially. My symptoms, compounded by medication side effects like drowsiness, dizziness, nausea, and dehydration, do not allow me to function in a work environment.

I invite you to consider the symptoms you feel when you have the flu. Your body aches all over, you are tired to the point of exhaustion even though you haven’t done anything, you can’t think well from the pain and the fatigue, and you want someone there to take care of you, but you also don’t want to be around people. You’re allowed to be sick for a few days, but people expect you to get better with rest and medication, and you usually do. But if you were to remain sick with the same symptoms forever, people would no longer pity you, even after showing them a medicine cabinet full of failed medications. They’d wonder why you don’t get better. You’d start to internalize these ideals, leading to your belief that you shouldn’t be sick. So, though you are still sick, you start acting like you are healthy just to be accepted, and subsequently become sicker. Because no one likes someone who is sick all the time, do they? These are some of the dehumanizing messages I hear weekly from those who think I should be healthy just because my illnesses and disabilities are invisible.

I still want to be human. By applying for disability, I threw in my last straw for a chance to preserve the health I have remaining, though as days tick by I watch even that “health” trickle through the hourglass. I implore you to consider the power of your role in deciding mine, and so many others’ futures, and help me maintain my humanity by awarding me Social Security Disability Insurance benefits based on my incontrovertible inability to support and sustain myself with work. All I want is to live a life where I can focus on my health and try to find some meaning. I also want peace. And I want the same for you – peace, as you leave work today, as you go home to your life, where you can forget about this work until tomorrow.

Thank you for your consideration.

Sincerely,

Charis Hill

Readers: I am not going to give up my fight for disability. I also wouldn’t be able to do it alone. If you are reading this and scared out of your mind from applying, please don’t be scared. Just know going into this battle that you cannot give up – you now know what to expect. I highly suggest hiring a Disability Attorney. A majority of Disability Attorneys do not get paid unless they win your case, and the fee is limited to 25% of the past-due benefits you are awarded, up to a maximum of $6,000. Note that the attorney will be paid only out of your past-due benefits, or “backpay.” If no back-dated benefits are awarded, the attorney will not receive a fee.

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Man in a wheelchair buying groceries.

How to Avoid 'Inspiration Porn' When Talking About Disability

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It’s time we reframe our thinking on inspiration and disability.

I want to motivate you to think about how you use the term “inspiration,” specifically in relation to people with disabilities. People with disabilities can be inspirational; many of us do incredible things. However, sometimes we can become subjects of something that has been referred to as “inspiration porn.”

This image of a runner with a disability is not inspiration porn, but is similar to photos that are made so with the use of problematic captions such as 'what's your excuse?'
This image of a runner with a disability is not inspiration porn, but is similar to photos that are made so with the use of problematic captions such as ‘what’s your excuse?’

Inspiration porn is a term used to describe society’s tendency to reduce people with disabilities to objects of inspiration. You’ve all seen the memes, “the only disability in life is a bad attitude.” Or a picture of a small child running on prosthetic legs accompanied by the caption “what’s your excuse?” These images make the people viewing them feel great, but often they take images of people with disabilities simply living their daily lives and make them extraordinary. But at what cost?

I’ve been the subject of inspiration porn. One of my earliest “inspiration porn” memories is from my primary school days. There was a prize giving at the end of each year. Without fail every year I would get an award for overcoming obstacles or perseverance. It was never explicitly stated what exactly I was overcoming, but I knew they were referring to my disability.

Everybody around me seemed thrilled. Everybody except me. While everybody around me was feeling inspired by the tenacious little disabled girl with a “can do” attitude, I wanted to run out of the building and hide. The awards emphasized my difference, and all I wanted was to be the same. They seemed to benefit those giving the award more than me.

Don’t get me wrong, the people that gave me these awards had the best intentions. It came from a place of kindness and love. The problem was those giving the award had been lied to. We all have. We’ve been told that disability is a bad sad thing. Therefore by proxy anybody with a disability is overcoming a cruel fate, and is inspirational simply for living daily life.

Having a disability has its challenges, but it’s not necessarily bad, and it’s certainly not sad. Like the rest of society, we are simply living. Some people with disabilities have done and will do inspiring things, and some of us won’t, and that’s OK. We’re just human after all.

There are a lot of people with disabilities who have done amazing things. One such obvious example is Stephen Hawking. He is probably one of the greatest living physicists in the world. He is an eminent figure in theoretical cosmology, and has come up with a lot of scientific theories that have revolutionized the way we understand our world and the universe. Yes, he has a disability, but he is not inspiring simply because he is disabled. He is inspiring because of his genius, and his determination to overcome less than ideal circumstances and realize that genius.  He prefers to be regarded as “a scientist first, popular science writer second, and, in all the ways that matter, a normal human being with the same desires, drives, dreams, and ambitions as the next person.”

Therefore, my challenge to you all is this. When you meet someone with a disability, connect with them as a human. Give credit where it’s due, but don’t reduce them to an object of inspiration that is constantly overcoming simply by living their daily life. You might discover something quite extraordinary… that we are simply ordinary!

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How School Discipline Policies Often Harm Students With Disabilities

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The issue of harsh punishment in schools disproportionately affects another overlooked, yet extremely vulnerable, population — disabled students. A report from the Civil Rights Project at University of California, Los Angeles, found that in the 2011-2012 school year, secondary students with disabilities were nearly twice as likely to receive an out-of-school suspension (13%) than students without disabilities (6%). Students with disabilities represented 12% of the total student population, but 58% of those placed in seclusion, and 75% of those physically restrained at school.

The Individuals with Disabilities Education Act (IDEA) is a law that requires schools to meet the educational needs of students with disabilities. Passed in 2004, IDEA describes the 13 categories of special education as:

Any student who falls within these parameters is entitled to a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE), meaning:

“To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.”

The inclusion of disabled students in regular classrooms with “typical” students is of great benefit to them, but it presents a particular set of challenges to the teachers charged with their instruction. They need to be equipped to meet the needs of both groups, but often they are not. The average history teacher would not be trained to address the inappropriate behavior or outburst of an emotionally disturbed student. They would have no choice but to do whatever it takes to quickly restore order in the classroom and minimize the impact on other students. It’s an issue of teacher training and how individual districts choose to address discipline among their disabled students. As one researcher put it:

“Administrators don’t suspend kids because they love kicking kids out of school. It happens because they don’t know what else to do.”

The situation intensifies when race is added to the mix. At the secondary school level, White students have a 6.7% suspension rate nationally, while Black students are suspended at a rate of 23.2% — more than three times as often. And having a disability unfortunately does not spare them from harsh punishment. More than one in four boys of color with disabilities, and nearly one in five girls of color with disabilities receive an out-of-school suspension.

Children of color and children from families of lower socioeconomic status are disproportionately diagnosed as disabled. There are many possible explanations for this. Children who grow up in poverty are more likely to be exposed to harmful environmental factors that can affect cognitive development. It can also be argued that teachers who do not adapt to the cultural learning differences of a diverse student population (which can lead to student apathy or aggression) contribute to the misdiagnosis of learning disabilities. It could be something as simple as a language barrier.

This kind of confusion often funnels children into the dreaded school-to-prison pipeline. In fact, a 2011 report stated that up to 85 percent of incarcerated youth have disabilities that would make them eligible for special education services.

So what can be done? It is worth noting that while there remains a need to recruit special education teachers, many special needs students spend at least a portion of their school day in a general education classroom. There are huge benefits to inclusion. Through the adoption of classroom protocols and procedures, students can develop skills that will serve them outside of the classroom as well. All teachers need to receive training that prepares them to responsibly interact with this portion of their student population.

This article originally appeared on Focus for Health.

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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.

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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.

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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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