What Qualifies Someone as Disabled?

By Crystal Lindell

There’s a common question in the disability community about what qualifies someone as “disabled.”

My advice to anyone considering this question about themselves is this: People who are not disabled do not sit around contemplating whether or not they are disabled. 

So, if you are wondering if your health issues qualify you as disabled: They do.  

A lot of Americans have a rigid idea of “disability” based on how it’s often portrayed in popular culture. The idea is that “real” disabled people use something like a wheelchair, a walking cane, or a walker. Those Hollywood props are what qualifies someone as legitimately disabled. 

But in real life, that’s not true. Disability is often gradual, slowly chipping away at our abilities – but taking them away nonetheless. Which means it can be hard to know when we’ve crossed the threshold into fully disabled. And we may arrive there without so much as a walking cane. 

In truth, it took me years to fully grasp this about my own diminishing health. 

My pain often makes it so that I cannot leave the house, even with pain medication. Grocery shopping trips leave me exhausted, assuming I even have the energy to push through that day’s pain to navigate the store in the first place. I am on daily medications, I put off showers because they are too difficult for me to handle, and I often cancel plans last minute when my body decides to be uncooperative. 

Yet despite all of that, I still did not know if I should consider myself "disabled."

Over time though, I have come to realize that my health problems impact so many aspects of my life, that of course I am disabled. 

After we decide to take on the label of “disabled” for ourselves, we often meet the next hurdle: pushback from loved ones and strangers who bristle at the distinction. 

There’s also a common sentiment among patients with chronic illness where they think if they meet some imaginary threshold of disabled, then finally people will start to accept their limitations and maybe even show some sympathy. Unfortunately, that is often not the case. 

When it comes to health issues, you will never find validation from others. There is no level of mobility aids or level of diagnosis you can get where people who’ve dismissed your health issues in the past will suddenly start to accept them. 

That’s in large part because when people interact with a disabled person, it requires them to contemplate the fact that their own body could eventually fail them one day. 

Some people choose to hold space for that realization in themselves and then express empathy. But others try to reject it, choosing instead to accuse the disabled person of being overdramatic. That’s because they don’t want to consider just how vulnerable our human bodies really are.  

I’ve heard people dismiss diagnosed cancer patients as “hypochondriacs” for complaining about their symptoms. I’ve seen people claim that POTS is not a real disability, despite the fact that it’s often debilitating and life-altering. And I’ve heard people tell loved ones not to use a wheelchair when they need it, because it might make them “give up.” As though we are ever allowed to give up in our bodies. 

Personally, I think of the time I sprained my ankle back in high school. At the time I was working at Walmart, and I went into work despite the severe pain, swelling and bruising on my ankle. Unable to put any weight on it, I used one of the store’s electric mobility scooters to get around the store during my shift. 

A co-worker felt the need to come right up to me and tell me that I shouldn’t be using it because I should be saving the scooters for people who “really” need them. Apparently being unable to walk did not qualify me. 

My advice here is that other’s opinions of your body are irrelevant. They don’t know what it’s like to live with your symptoms, so it doesn’t matter if they accept the label of disabled for you or not. All that matters is that you accept whatever you label you decide to use. 

And, like I said, if you’re wondering if you are “disabled” you probably are. And that’s okay. Now that you’ve named it, you can get on with the noble work of finding new ways to live with it.

A Disabled Activist Speaks Out About Feeling ‘Disposable’

By Rachel Scheirer, Kaiser Health News

In early January, one of the country’s top public health officials went on national television and delivered what she called “really encouraging news” on covid-19: A recent study showed that more than three-fourths of fatalities from the omicron variant of the virus occurred among people with several other medical conditions.

“These are people who were unwell to begin with,” said Dr. Rochelle Walensky, director of the Centers for Disease Control and Prevention.

Walensky’s remarks infuriated Americans with disabilities, who say the pandemic has highlighted how the medical establishment — and society at large — treats their lives as expendable. Among those leading the protest was San Franciscan Alice Wong, an activist who took to Twitter to denounce Walensky’s comments as “ableism.” Walensky later apologized.

Wong, 47, moves and breathes with the aid of a power wheelchair and a ventilator because of a genetic neuromuscular condition. Unable to walk from around age 7, she took refuge in science fiction and its stories of mutants and misunderstood minorities.

Her awakening as an activist happened in 1993, when she was in college in Indiana, where she grew up. Indiana’s Medicaid program had paid for attendants who enabled Wong to live independently for the first time, but state cuts forced her to switch schools and move back in with her parents.

Wong relocated to the Bay Area for graduate school, choosing a state that would help her cover the cost of hiring personal care attendants. She has since advocated for better public health benefits for people who are poor, sick, or older or have disabilities.

Eddie Hernandez for KHN

The founder of the Disability Visibility Project, which collects oral histories of Americans with disabilities in conjunction with StoryCorps, Wong has spoken and written about how covid and its unparalleled disruption of lives and institutions have underscored challenges that disabled people have always had to live with. She has exhorted others with disabilities to dive into the political fray, rallying them through her podcast, Twitter accounts with tens of thousands of followers, and a nonpartisan online movement called #CriptheVote.

Wong is nocturnal — she typically starts working at her computer around 9 p.m. On a recent evening, she spoke with KHN via Zoom from her condo in the city’s Mission District, where she lives with her parents, immigrants from Hong Kong, and her pet snail, Augustus. The interview has been edited for length and clarity.

Q: Why do you often refer to people with disabilities as oracles?

Disabled people have always lived on the margins. And people on the margins really notice what’s going on, having to navigate through systems and institutions, not being understood. When the pandemic first hit, the public was up in arms about adjusting to life at home — the isolation, the lack of access. These are things that many disabled and chronically ill people had experienced. Disabled people had been trying forever to advocate for online learning, for accommodations in the workplace. The response was: “Oh, we don’t have the resources. It’s just not possible.”

But with the majority inconvenienced, it happened. Suddenly people actually had to think about access, flexibility. That is ableism, where you don’t think disabled people exist, you don’t think sick people exist.

Q: Have you noticed that kind of thinking more since the pandemic began?

Well, yes, in the way our leaders talk about the risks, the mortality, about people with severe illnesses, as if they’re a write-off. I am so tired of having to assert myself. What kind of world is this where we have to defend our humanity? What is valued in our society? Clearly, someone who can walk and talk and has zero comorbidities. It is an ideology, just like white supremacy. All our systems are centered around it. And so many people are discovering that they’re not believed by their doctors, and this is something that a lot of disabled and sick people have long experienced.

We want to believe in this mythology that everybody’s equal. My critique is not a personal attack against Dr. Walensky; it’s about these institutions that historically devalued and excluded people. We’re just trying to say, “Your messaging is incredibly harmful; your decisions are incredibly harmful.”

Q: Which decisions?

The overemphasis on vaccinations versus other mitigation methods. That is very harmful because people still don’t realize, yeah, there are people with chronic illnesses who are immunocompromised and have other chronic conditions who cannot get vaccinated. And this back and forth, it’s not strong or consistent about mask mandates.

With omicron, there is this huge pressure to reopen schools, to reopen businesses. Why don’t we have free tests and free masks? You’re not reaching the poorest and the most vulnerable who need these things and can’t afford them.

Q: How has your life changed during the pandemic?

For the last two years, I have not been outside except to get my vaccinations.

Q: Because you’re so high-risk?

Yeah. I have delayed so many things for my own health. For example, physiotherapy. I don’t get lab tests. I’ve not been weighed in over two years, which is a big deal for me because I should be monitoring my weight. These are things I’ve put on hold. I don’t see myself going in to see my doctor any time this year. Everything’s been online — it’s in a holding pattern.

How long can I take this? I really don’t know. Things might get better, or they might get worse. So many things disabled people have been saying have been dismissed, and that’s been very disheartening.

Q: What kinds of things?

For example, in California, it was almost this time last year when they removed the third tier for covid vaccine priority. I was really looking forward to getting vaccinated. I was thinking for sure that I was part of a high-risk group, that I’d be prioritized. And then the governor announced that he was eliminating the third tier that I was a part of in favor of an age-based system. For young people who are high-risk, they’re screwed. It just made me so angry.

These kinds of decisions and values and messages are saying that certain people are disposable. They’re saying I’m disposable. No matter what I produce, what value I bring, it doesn’t matter, because on paper I have all these comorbidities and I take up resources. This is wrong, it’s not equity, and it’s not justice. It took a huge community-based effort last year to get the state to backtrack. We’re saying, “Hey we’re here, we exist, we matter just as much as anyone else.”

Q: Do you think there’s any way this pandemic has been positive for disabled people?

I hope so. There’s been a lot of mutual aid efforts, you know, people helping each other. People sharing information. People organizing online. Because we can’t wait for the state. These are our lives on the line. Things were a little more accessible in the last two years, and I say a little because a lot of universities and workplaces are going backward now. They’re doing away with a lot of the hybrid methods that really gave disabled people a chance to flourish.

Q: You mean they’re undoing things that helped level the playing field?

Exactly. People who are high-risk have to make very difficult choices now. That’s really unfortunate. I mean, what is the point of this if not to learn, to evolve? To create a new normal. I can’t really see that yet. But I still have some hope.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Cities Sued to Make Sidewalks Accessible for Disabled People

By Maureen O’Hagan, Kaiser Health News

From her Baltimore dining room, Susan Goodlaxson can see her neighbor gardening across the street. But while other neighbors stop to chat, Goodlaxson just watches from the window. She uses a wheelchair, and there isn’t a single curb ramp on her block.

If the 66-year-old wanted to join, she’d have to jump her wheelchair down the 7½-inch curb and risk a fall. Ditto if she wanted to wheel over to the library, a trip that would require riding in the street to avoid rampless curbs and broken sidewalks.

“I don’t feel like it’s asking too much to be able to move your wheelchair around the city,” she said.

Federal law backs her up. Since 1990, the Americans With Disabilities Act has required governmental entities to provide people with disabilities access to programs and services enjoyed by their nondisabled peers. That includes sidewalks and curb ramps that make it possible to safely cross the street.

In Baltimore and many other communities across the U.S., there has been widespread noncompliance with this part of the law.

“An awful lot of [communities] have either disregarded their obligations under the ADA or made it the last priority,” noted Tom Stenson, a lawyer with Disability Rights Oregon, a nonprofit advocacy group. “There’s a culture throughout America of not taking the needs of people with disabilities seriously.”

SUSAN GOODLAXSON

In Baltimore, just 1.3% of curb ramps meet federal standards, according to the city’s own figures. In Oregon, about 9% of corners maintained by the state transportation department are compliant. San Jose, California, counted 27,621 corners with faulty or nonexistent curb ramps. Boston estimates fewer than half of its curb ramps are compliant.

Class-Action Lawsuits

In recent years, there’s been a flurry of class-action lawsuits, including one filed against Baltimore in June, with Goodlaxson among the plaintiffs.

Philadelphia was sued in 2019 over the condition of its sidewalks. Chicago was sued the same year for failure to install audible pedestrian signals, more than a decade after settling a suit over curb ramps.

In 2018, Atlanta was sued. A survey there determined that only 20% of sidewalks were in sufficient condition to be used by people in wheelchairs or motorized scooters and about 30% had curb ramps. Seattle settled a class-action suit in 2017. San Francisco and Long Beach, California, were sued in 2014 to make their sidewalks more accessible to wheelchairs.

The city of New York and its transit authority have faced repeated major ADA lawsuits, some alleging the same lack of access for people with disabilities that was supposed to be addressed in a lawsuit that was filed in the 1990s and later settled.

Los Angeles settled what is believed to be the largest of these suits in 2015. Its problems with sidewalks and curb ramps were so widespread that the city estimated it would cost $1.4 billion and take 30 years to get into compliance. In the years leading up to the suit, the city wasn’t allocating money for sidewalk repairs, for the ADA or otherwise, even while paying out millions in injury claims.

In all, hundreds of jurisdictions have faced lawsuits or entered settlement agreements after failing to meet ADA requirements for pedestrians and mass transit users.

The sheer number of noncompliant sidewalks, curb ramps, pedestrian signals and subway stations illustrates the challenges for people with disabilities.

It also leaves cities in a legal and financial squeeze, with the average curb ramp costing between $9,000 and$19,000. When the court requires a jurisdiction to build thousands of them to catch up, it can strain budgets.

Rosem Morton / for KHN

The ADA and the 1973 Rehabilitation Act resulted in significant changes that improved access and accommodations for people with disabilities. The ADA is clear that people with disabilities have the same right to pedestrian infrastructure as anyone else.

There are requirements covering a curb ramp’s width, slope and other specifications. Even a 1-inch lip can be too high for a wheelchair user to navigate. A slope that is a few degrees too steep can tip someone to the ground. Sidewalks that are crumbling, pothole-filled or otherwise obstructed — with utility poles, for example — force wheelchair users into the street for a dangerous ride.

No one expected the ADA to fix all these problems immediately. Under the law, new sidewalks must be built for accessibility. As for existing sidewalks, a federal appeals court in 1993 ruled that curb ramps must be installed or regraded when the road is altered — say, when it’s repaved.

Compliance Lags

Yet by 1999 it was clear many jurisdictions were ignoring the law. The U.S. Department of Justice began enforcement efforts, entering into settlement agreements with more than 200 non-compliant jurisdictions representing every state since 2000.

Still, compliance still lags.

Officials in Baltimore, New York and Los Angeles declined to comment for this article. Tony Snyder, manager of the Oregon Department of Transportation’s ADA program, said siloed funding sources, strict regulations and costs have been among the hurdles over the years.

“It wasn’t that ODOT doesn’t value accessibility,” he said. While fewer than 10% of the state’s ramps meet standards, he said, a lot of noncompliant ramps are nonetheless “usable.”

Kelly Lynch, deputy director and general counsel for the Montana League of Cities and Towns, an association that represents 127 municipal governments, agreed that costs can add up. She’s been working to help fellow Montanans —and, she hopes, officials in other jurisdictions across the country through the National League of Cities — find a path toward full accessibility, even if the steps are incremental.

Some changes, including educating road crews on the rules, are relatively simple. But a bigger problem is a widespread lack of spending on the nation’s infrastructure. “Our streets are falling apart, and so are our sidewalks,” Lynch said.

In August, the Senate defeated an amendment by Sen. Tammy Duckworth (D-Ill.) to a $1 trillion infrastructure bill that would have required state and local entities to describe how they would use federal dollars to improve accessibility for people with disabilities and for underserved communities. Sen. Pat Toomey (R-Pa.) called Duckworth’s amendment “politically correct virtue signaling” and argued that transit agencies don’t need that kind of federal oversight.

On top of the broader infrastructure issues, many officials don’t fully understand the ADA or its requirements, Lynch believes. And as the mother of a disabled son, she also said there’s another big factor at play: “People still discriminate against people with disabilities.”

As for Baltimore, Goodlaxson said she repeatedly called the city asking for curb cuts and sidewalk repairs. She remembers a crew coming to look at the sidewalks — and then nothing happening.

Advocacy organizations tried to negotiate with city officials, hoping to get Baltimore’s infrastructure brought into compliance on a timetable. When that didn’t work, they filed suit.

Most of these kinds of ADA cases begin similarly, with negotiations long before lawsuits. Some jurisdictions settled quickly and worked hard at improvements. Other cases go less smoothly. Oregon’s transportation department, which was also sued, is in danger of missing its construction deadlines under the settlement. Some repairs had to be redone because they still fell short of ADA requirements.

Sometimes cities try to get cases thrown out of court by pointing to the 1993 appeals court decision and arguing there’s no evidence the road has been altered since then, so ADA requirements haven’t kicked in. In New York, the transit authority argues in an ongoing lawsuit that while wheelchair users can’t ride, say, three-quarters of the city’s subways because there are no elevators, they can instead take the bus.

Some jurisdictions fight bitterly. Los Angeles spent five years in court before agreeing to settle. Linda Dardarian, one of the plaintiff’s attorneys, said cities don’t fully recognize sidewalk and curb ramp accessibility as a civil right. “They have viewed it as just another maintenance obligation, [like] grooming street trees.”

When the case was settled, the judge ordered Los Angeles to pay nearly $12 million to cover the other side’s legal fees and costs, on top of the estimated $1.4 billion it will cost to come into compliance.

Under these settlements, repairs often stretch a decade or more, and the city or town typically must pay for surveys, measurements and disability consultants to ensure compliance.

From the plaintiffs’ point of view, the challenge of these lawsuits is that there isn’t a huge hammer to hold governments accountable.

“If you don’t build the ramps, the penalty is you have to build the ramps,” said Stenson of Disability Rights Oregon, which provided legal representation to a plaintiff in the Oregon transportation department suit.

For those who can easily get around town, the issue can be invisible.

Goodlaxson didn’t see the problem until she began using a wheelchair five years ago, after surgery for a brain tumor. She remembers seeing people riding their wheelchairs in the street, thinking, “that doesn’t look safe. But I didn’t give it any more thought.”

Now, she realizes “people are terrified, but they can’t do it any other way.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Advocating for Your Disabled Child at Public Schools

By Barby Ingle, PNN Columnist

With school starting in the coming weeks, I have been thinking about the special assistance I recieved as a child and how hard my mom and family had to fight for the help I needed. As a child, I was diagnosed with a severe learning disability and had to take special education classes through middle school and have special provisions and testing in high school and college.

According to the U.S. Department of Education, about 5.5 million children with disabilities receive special education and related services, and are protected through the Individuals with Disabilities Act (IDEA). Some kids with special needs do not qualify under IDEA, but are served under Section 504 of the Rehabilitation Act of 1973.

If you are a parent with a disabled child, you may need to inform school administrators that IDEA and the Americans With Disabilities Act (ADA) establish a legal premise that ensures that children with invisible disabilities are afforded the same rights and access to services as children with other disabilities.

Being a part of this system has given me some insight as to how it works. For instance, my parents had to fight for my right to special education teachers and sessions. It should have been much easier for me to get that assistance, but in the 1970’s schools often didn’t want to help.

Federal law prohibits discrimination based upon disability. I eventually got the care I needed, but had to switch from private school to a public school, and my parents had to file and win a lawsuit for the special needs program to start at my elementary school. Their activism not only helped me, but all of the disabled kids that also needed assistance.

What Section 504 Requires

Section 504 is now commonly used across the country for children with learning disabilities, but I still hear of cases where a child has a chronic illness and their parents have to fight for access to a special needs program.

Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled. It’s purpose is to give children the tools they need to prepare them to be adults who can participate in society through employment and independent living.

A child with a pain disease, disorder, syndrome or condition is protected under Section 504 if they have a physical or mental impairment that substantially limits one or more major life activities. Special assistance should be individualized to your child’s specific needs. This includes deciding how many days they go to special sessions, if they are in the main classroom full-time or part-time, if they get to take their tests in private rooms or have someone read to them the questions, and being allowed to respond verbally if writing is difficult for them.

Many children with chronic pain match the legal definition of a disability, which qualifies them to be protected by federal laws in school and in society as a whole. Even though the pain can’t be seen by others and is subjective, these kids are protected under the law.

How to Help Your Child

A child with chronic pain or an invisible disabling illness will experience physical, social and emotional challenges. You can help educate administrators, teachers and classroom aides about your child’s condition by giving them a list of symptoms and special needs. Be sure to include invisible symptoms and how the child learns best. For instance, they may need a quiet area where the lights are lowered during testing to help them concentrate. Or a child may need to wear sunglasses if they experience migraines.

A parent can also list their child’s strengths, aspirations, likes and dislikes. You should be prepared with medical documentation to educate staff about your child’s conditions and be prepared to appeal decisions made by the school if they are not providing what it takes to assist your child.

Know which kind of special accommodations are needed and should be available. Does your child need adjusted class schedules or grading, behavior management support, extended time on tests and assignments, modified textbooks or audio-video materials, reduced homework or classwork, verbal or visual testing, or technology aids?

Some children may also need help making the transition between homeschooling, special classes and regular classes. It is your responsibility as a parent to stay on top of this and keeping all involved in the loop. Remember, you are the voice of your child and can speak up at any time throughout the year.

Unlike when I was a child who started in private school and had to switch to public schools to get the assistance I needed, today students with disabilities who attend charter schools have the same Section 504 rights as those who attend public schools.

My final tip is to keep a positive attitude when facing challenges and use your right to appeal school decisions when appropriate. Keep track of your child’s progress and advocate for additional services or changes when needed. These needs may change over time. I needed more assistance and help up until 9th grade, and as I learned and grew my plan changed.

From kindergarten through college, keep an eye out for when changes are needed or when services need to upgrade or downgrade, and whether something your child needs is being neglected. For more information and assistance, contact the National Education Association.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Disabled Workers and Chronic Pain Patients Need a Voice in Congress

By Amanda Siebe, Guest Columnist

I’ve always wanted to serve my community. Nine years ago, I thought the best way to do that would be as an EMT and firefighter. I wanted to be there for people in their hour of need to provide help and comfort. But in 2011, that goal came to an abrupt end.

While working as a restaurant manager, I fell and badly sprained my ankle. What should have been six weeks of recovery turned into full body Reflex Sympathetic Dystrophy (RSD). Because my employer placed more value on profits than they did on my health and safety, I continued to work in the kitchen, repeatedly slipping and falling before abandoning my crutches.

That simple injury ended up taking my dignity, financial stability, and eventually it will take my life. All because my employer didn’t have another manager to run the restaurant while I recovered.

Because of my disability, I never thought much about running for political office. But as I watched the lack of representation the disabled community has and felt the impact policies and funding cuts have on my life, I began to wonder: How could I not run?

I may not have the body that I once did, but my mind and passion are still sharp, as is the case with many disabled individuals. My wheelchair has not made me any less of a person or any less deserving of a representative who looks like me and understands my plight.

So here I am, taking a stand to say that while we may be disabled, we’re still worthy of quality life and pursuit of happiness.

I’m running in the 2020 election as a Democrat in Oregon’s 1st Congressional District to fight for the care and benefits we deserve and were promised.

Federalize Workers Compensation

AMANDA SIEBE

As a disabled worker, I was assured there was a safety net to catch us if we got hurt, but I quickly realized that’s not the case. We aren’t told that workers compensation is run by private insurers who have more loyalty to their shareholders than to injured workers. These companies increase profits by denying injured workers medical care, leaving them to suffer as they fight to justify every treatment, medication and benefit.

Currently, each state dictates the worker compensation laws these companies follow, resulting in injured workers getting better treatment in some states than in others. A worker in New York is no more valuable than a worker in Alabama. That’s wrong and must change.

We must end this system of profits over people. We need to federalize workers compensation and prevent lobbyists and private interest groups from ripping apart our safety net. Workers who give their time, bodies and lives to employers must receive the care and respect they deserve.

End Forced Tapering of Pain Patients

Patients with chronic and debilitating pain have been hit especially hard during the opioid crisis. Patients on stable doses of prescription opioids for years are being forcibly tapered and left to suffer. Less than 3% of chronic pain patients become addicted to opioid medication, but doctors are still taking many patients off of these drugs.

When patients are forcibly tapered without properly managing their pain, it forces some to turn to the bottle, the street or suicide for pain management. Thousands have already died as a result of losing their opioids. This must stop.

Increase Disability Payments

After my injury, I went from being the family breadwinner, earning about $50,000 a year, to trying to survive on $735 a month. Young disabled people are especially hard hit because we don’t have decades of high-earning work history to draw on, resulting in lower benefits. That’s if they can even get on SSDI. Those who become disabled before 45 often won’t get approved for disability or have to fight for years to get it.

We must stop using age as a determinate of disability. If disability doesn’t discriminate based on age, then neither should our government.

Currently, there are 554,000 homeless people in our country. Of those, 40% are disabled and 30% are elderly. The average Social Security Disability benefit is $880, while the average rent for a 1-bedroom apartment in Portland, Oregon is $1,400.

It’s no wonder when our government pays starvation wages as a benefit that so many disabled and elderly become homeless. We can reduce our nation’s homeless rate by over half just by making SSI and SSDI comparable to a living wage. We must ensure our most vulnerable citizens have a basic quality of life, too.

IMAGE BY NATALIE BEHRING

The disabled community needs many other things that have gone ignored by Congress. While the Americans With Disabilities Act of 1994 was a huge step forward, it hasn’t been updated in 25 years. We need the ADA to match the knowledge and technology of today.

Many people provide care to disabled family members while still holding down a full-time job. It’s time we paid these family caregivers, who save insurers and healthcare providers hundreds of billions of dollars each year. Paying them would give needy families financial stability and independence.

Medicare For All

We’re an important voice in the healthcare debate and we need to be part of the conversation. If we are to have Medicare For All, then it needs to cover all conditions, all medications and all medically necessary treatment for all patients. Medicare as it currently stands is underfunded and not good enough. We need to fight for universal healthcare coverage so patients no longer have to fight for proper care.

Even though 1 in 5 adults are disabled, we are sorely under-represented in Congress. We need representatives who understand the unique situations and problems we face. We’ve been forced to sit on the sidelines as others decide our care, benefits and future. It’s time we had a say.

For too long, we’ve been victims of circumstance — told that we can’t run for office because our bodies prevent us from giving everything we have. That’s a lie.

Running for Congress isn’t what I thought I’d do be doing with the time I have left, but everyone deserves representation. We’re a part of this country and it’s time we were treated as such. It’s time for the disabled community to unite and be represented. We deserve better. 

Amanda was diagnosed in 2012 with Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). Since her diagnosis, she has advocated for chronic pain and disability rights. In 2016, Amanda was the recipient of the WEGO Health Advocate Rookie of the Year Award.

Amanda has dedicated her life to improving her community and has fought to teach her 11-year-old son, Keagan, the same. Further information about Amanda’s congressional campaign can be found on her website.

The information in this column is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Disabled by the War on Opioids

By Michael Emelio, Guest Columnist

I am 53 years old and have severe disc degeneration spread throughout my spine and scoliosis in my lower back. As if that weren't enough, I've also been diagnosed with fibromyalgia.

I have been on opioid medication since 2001.  For over a decade the meds helped reduce the pain enough so that I could still work 40 hours a week, including some heavy lifting. But in 2013 the DEA shutdown the doctor I had been with for over 12 years, forcing me to find a new pain management doctor.

The new doctor not only refused to continue the meds that were working for me, but immediately cut my opioids by over 90% without tapering me down at all. My pain increased so much that I couldn't return to work, even for light duty.

When I asked the doctor why he wouldn't continue the prescriptions my previous doctor was giving me, he said and I quote, “Because of the crackdown on pain meds you're not going to find a doctor in this state will give you more than what I'm giving you now." 

Mind you, this was back in 2014, and was still less than the maximum 90mg morphine equivalent dose that the CDC started recommending in 2016. 

Little did I know that was only the beginning of my nightmare. Since back surgery wasn't an option, the doctor told me my only choice was to have epidural steroid injections.

MICHAEL EMELIO

I did some research and had legitimate reservations about the injections, but without being offered any other options and not wanting to be labeled a drug seeker, I reluctantly agreed. I couldn't afford to be out of work much longer.

The injections were administered a month apart. The first series did nothing for my pain and the second one actually increased the pain by over three-fold. This resulted in me becoming completely bedridden 24 hours a day and struggling to complete the most basic daily life functions. I'm not talking about doing laundry and cleaning house. I'm talking about just feeding myself.

This left me unable to do any kind of work whatsoever, let alone return to my regular job of over 7 years, where I was working towards retirement. When I asked the doctor what was I supposed to do now, his response was, “Have you considered applying for disability?"

Unless you've been here, you cannot fathom the level of shock and horror that I felt at that moment, yet alone the level of injustice and outrage. A word that comes to mind is appalled, but that doesn't even begin to describe it. I went from being an able-bodied worker to disabled and bedridden 24 hours a day.  And for no other reason than the War on Opioids!

To be perfectly clear, I didn't take illegal drugs and I never abused, gave away or sold my prescriptions. I passed all my drug tests, never had a record of drug problems, or even a DUI. I didn't even drink alcohol. I did NOTHING to give them any reason whatsoever to take my medications away.

My current doctor is currently weaning me off the last of my opioids, stripping me of the last tiny bit of medication that have any effect on my pain. What little quality of life I have left is about to be taken away completely.

The only thing I can do now is pray that I am able to hold on and not become another suicide statistic after being forced to live in agony day-in and day-out. All because of the barbarically handled, totally blind, and uncompassionate War on Opioids.

Don't get me wrong. I'm not against fighting drug abuse and addiction, I'm just against the way it's being fought. Taking these medications away from people who have proven they need and use them responsibly will fail to have any impact whatsoever on the addicts who are abusing them.  It only serves to punish the honest and innocent. Why should I be punished and forced to live a life of pain, misery and indignity when I have done nothing wrong?

With the help of opioids, I was still very active and happy, enjoying things like riding motorcycles, jet skiing, and even paragliding. Although recently becoming single, I had no reason not to hope for eventually finding the right woman and living happily ever after.

But I've been robbed of all of that now. I am bedridden and struggling to survive on nothing more than disability income. My pain has tripled thanks to the unnecessary and unwanted steroid injections, and for no other reason than the fear instilled in my doctor by the DEA and CDC.

And it's still not over. The only thing my doctor is offering now is more of the very same injections that put me here in the first place and robbed me of my life.

What keeps me fighting is the sheer anger and outrage that I have for the injustice of it all. If you are a doctor, DEA agent, politician, or anybody else who is not a chronic pain patient – then take a minute to realize that you are only one car accident, one slip, or one fall away from this happening to you.

STOP THIS MADNESS!

Michael Emelio lives in Florida.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why Are They Being So Cruel?

By Debbie Duke, Guest Columnist

I am 63 years old and have been on pain meds consistently since the age of 38.  I have systemic lupus and scleroderma, which fortunately is in remission.  I also suffer from gout, fibromuscular dysplasia, scoliosis, kidney pain and post-operative pain from breast cancer surgery.

My experience with pain management doctors in the beginning was very pleasant and I was getting relief from my agony. I was disabled but still functional due to pain medication. 

But recently things have changed.  After several years of using a pain pump, I decided to go back to oral medication to have more control.  The pump was not that effective for breakthrough pain and made me feel disconnected. After giving up on the pump, I changed doctors and the new one gave me the medication I had been before.

On my last visit, he said a new law requires patients on pain meds to have no more than the equivalency of 90mg of morphine.  Then he cut my dose in half.  I am now in agony and can see why people would turn to other ways of getting relief or decide to end it all. 

I love life and have many reasons to live. I care for a grandchild who had nearly been lost to foster care. Now, due to my inability to get around very well, I may not be able to continue taking care of her. 

DEBBIE DUKE

I can't bear to think of it. 

Why are they being so cruel to those of us who are law abiding, while the crooks get away with it?  When someone grabs grandma's meds from her purse or medicine cabinet, why is that grandma’s fault? 

Overdoses have been around for years and years. Who did we blame?  The one who stuck the needle in their arm, that's who.  Yes, we have a drug epidemic, but do something about the drugs coming across our borders. There has been enough squeezing of patients. Give them what works for them.  It sickens me to see patients treated unjustly turning to other ways to help themselves.

I'm truly afraid that everything in my life as I know it will end.  Thanks to irrational politicians who have taken away our right to be as free of pain as possible.

I think sometimes about what will be said in the future.  We'll be saying, “Remember the days when we were able to have pain relief and no one had to suffer?”

I know that people are dying, but to equate prescriptions with illegal drugs to make some political point is wrong. I wish those that are in pain could march down Pennsylvania Avenue. But we are too sick for that. 

Debbie Duke lives in Florida.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.