Macy with her service dog.

How Medicaid Cuts Would Hurt Me as a Person With a Disability

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I have a strange favor to ask: Stop scrolling and look at my face. Really look at it. Now, as you read the rest of these words, hear my story. Really let yourself hear. At 22 years old, I am a recipient of a Master’s degree from the University of Washington. I am a lover of sports, people, books, dogs, the outdoors when it doesn’t involve bugs, coffee, adventures and foods that aren’t spicy. I am a daughter, a sister, a friend. I am a dreamer. And I am also the #FaceOfMedicaid#IAmAPreexistingCondition.

For at least 20 of my 22 years on this planet, I have been given everyday reminders that I live in a world that wasn’t made for me, a world that quite frankly, doesn’t know what to do with me. These reminders come in many forms, whether it be a building I can’t enter because of the stairs leading up to it, the lady who can’t fathom why I’d be at the fill-in-the-blank-with-any-place-you-can-think-of (park, grocery store, baseball game, etc.) by myself, the teacher who tells me I don’t belong in her classroom, pointing instead to the room where the ”special students” go, and the people who simply say “I’m so sorry” and walk away. But that’s OK, because I have thick skin and an army of people behind me that have helped me knock down every wall. I also have a visceral reaction to the word “can’t” that causes me to fight harder and longer than even I knew possible. Quite simply, I have worked my ass off to get to where I am.

Societal barriers aside, I am almost as frequently reminded of my difference because of personal (the things that make people uncomfortable when I talk about them) issues related to my disability. See this wheelchair? It takes the place of the legs you don’t think twice about when you jump out of bed and sprint out the door when you’re late to work in the morning. I have to fight for it. Every five years, I have to prove I’m worthy (or needy enough) for it. Medicaid helps me do that.

While we’re on the subject of limbs that don’t work properly, I only really have control over my left arm. Anything requiring more than one functional limb, I need help with. That means driving, bathing, dressing… peeing. Yeah, I went there. I need help with all of it. And in large part, Medicaid gives me that help. It took me a long time to accept help with these physical tasks without feeling like a complete burden. I now understand, and live into, the fact that I have as much of a right as anyone to get up in the morning, to go to work, to live my life, and not feel guilty about it.

This new healthcare bill tells me otherwise. It says those are not rights I have, that I’m not worth it, not worthy, and nothing but a burden. After all I’ve worked for, I don’t even have words to describe how big of a slap in the face it is to have the government of the country I’ve always called home tell me that.

Do me a favor: take a deep breath. I have dear friends who depend on ventilators, who will be told they don’t have the right to breathe if this bill is passed. If you are able, take that breath again. Can you imagine having someone else who doesn’t even know you tell you if you do or do not have a right to breathe? No? Then help me fight.

I watched my city, Seattle, come alive yesterday in support, celebration and love for the LGBTQ community. I watched that same city break out in rage and heartbreak when a black women was killed by white cops. I’m right there with you. Everyone deserves to be safe and loved, period. Regardless of everything. But I want to make sure folks remember that includes disability too. Movements towards racial and marriage equality did not happen without members outside of those communities pushing for it, against hate. The disability community and the fight against this humiliating bill is no different. Know that.

As you wind down your day, think about everything you do that requires more than one limb. Cooking, cleaning, getting comfortable in bed, plopping down in front of the TV. If this bill is passed, thousands of Americans will be forced into nursing homes because they need help with the simple things you just did. As you take that last deep breath before you drift off to sleep tonight, know there are people who may not have that right tomorrow should the bill pass.

I have one more favor to ask: get involved. Even, perhaps especially if, this bill doesn’t touch you or your life, get involved. We need you. Call your Senators. Tell them  someone you love will be affected by this bill, and you’re not OK with it. Even if you don’t know me, I guarantee you know and love someone who is at risk. If that’s too much, that’s OK! Please share this post. I want Washington state senators (and all members of the Senate for that matter) to see my face so many times that they are forced to read my story.

I’m not saying Medicaid and the current healthcare system in this country is perfect. It’s not. What I am saying is that life with a disability in this country can be hard. Medicaid helps. It helps a lot. Its repeal without a replacement (as is proposed) would be devastating to many with disabilities. My life matters. My friends’ lives matter, and I will do everything in my power to make sure the laws of this country reflect that. That starts now. That starts today. Please help me #savemedicaid

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.

A version of this post originally appeared on Macy’s Facebook page.

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New Film ‘Breathe’ Depicts Life of Disability Advocate Robin Cavendish

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On Thursday, the trailer was released for upcoming movie “Breathe,” tapped to open the BFI London Film Festival in October. The film offers a look at the life of one of the U.K.’s first disability advocates, Robin Cavendish, played by Andrew Garfield.

Cavendish was an adventurous young man whose life was nearly cut short after he developed polio in 1958 at age 28. Although he was paralyzed from the neck down, unable to breathe without a respirator and told he had only a few months to live, Cavendish fought to leave the hospital, with the help of his pregnant wife Diana. Together they blazed a new trail, determined to raise their son and live life to the fullest.

With the help of a friend, university professor Teddy Hall, Cavendish developed the first wheelchair with a built-in respirator and other new technology to bring mobility and independence to his fellow “responauts.” He became one of the first campaigners for the right of people with disabilities to live in the community rather than in institutions. A scene from the trailer shows him being wheeled past rows of patients in iron lungs and asking a hospital director, “Why do you keep your disabled people in prison?”

The couple traveled widely throughout Europe and founded an accessible holiday complex on the South Coast of England, The Netley Waterside House, so people with disabilities and their families could vacation together. Cavendish died in 1994 at the age of 64, becoming one of the longest-lived polio survivors in Great Britain.

“Breathe” marks the directorial debut of Andy Serkis, known for his acting roles including Gollum in the “Lord of the Rings” series and Caesar in the “Planet of the Apes” series. Serkis’ business partner, Jonathan Cavendish, is the son of Robin and Diana Cavendish and produced the film.

Jonathan Cavendish and Robin’s widow, Diana, served as consultants on the film. Serkis’ sister has multiple sclerosis.

The Mighty reached out to Imaginarium Studios to inquire as to whether people with disabilities were consulted or cast in the film but has not yet received a response.

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Medicaid Is Keeping People With Disabilities From Getting Married

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As politicians propose cutting Medicaid by 25 percent, more than six million disabled Americans face losing the coverage and services they need to live. Among those unfamiliar with the necessity of Medicaid, an attitude exists that those with disabilities choose to rely on government assistance — even when it restricts their lives and liberties. For Americans with disabilities, being on Medicaid isn’t a choice, it’s a means of survival.

 

There are few things in this world Kimberly Glass wants more than to marry her fiance, Jacob Lombardi. The pair met 15 years ago when they were in high school. Twelve years later Glass and Lombardi reconnected and started dating. Now, they have a 1-year-old daughter named Abbigale.

What they don’t have is the ability to get married — not if Glass wants to survive.

Glass, 35, was born with osteogenesis imperfecta, or as it’s commonly known, brittle bone disease, a rare genetic condition affecting less than 50,000 Americans. Over the past three decades, her fragile bones have endured hundreds of fractures — so many, she’s lost count.

To get the specialized care she needs, Glass is on Medicare and Medicaid. Any other insurance would not be enough to cover the treatment her condition requires. She qualifies for Medicare — a federal program based on Social Security — because of her disability and prior work history. Glass also receives Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI) and Medicaid, a need-based program for low-income Americans as well as people with disabilities.

While Medicare provides some coverage, it alone is not enough to cover the long-term medical needs of those living with a disability. Over the course of a month, Glass estimates she takes about $1,000 in medication. The power chair she requires to stay mobile cost $23,000; the manual wheelchair she alternates to, when required, another $2,000. And then there are the specialists she needs to see, hospital visits for broken bones, treatments for back problems and pain management.

Even with a well paying job, Glass said, she would be unable to cover her medical expenses. “I have a lot of stuff that is considered ‘special needs.’ A typical insurance company won’t cover it. If they did it would be a huge copay,” she told The Mighty.

“It’s almost impossible for people to self-finance the services and supports they need, unless they are extremely wealthy,” said Lisa D. Ekman, JD, MSW, director of government affairs for the National Organization of Social Security Claimants’ Representatives (NOSSCR). “This is literally a life-or-death decision for people. Private insurance does not cover them, so Medicaid is the only source for people to get those services and supports.”

When Glass looked into buying an insurance plan that would best suit her needs, the cost was too high. Just to cover herself would cost between $2,000 to $3,000. That’s where Medicaid comes in.

Medicaid picks up where Medicare lacks, covering premiums, deductibles, co-payments, coinsurance and other services. However, since Medicaid is need-based, to qualify for the program in Nevada, where Glass lives, you must have an income below 138 percent of the federal poverty line. If you are single, that figure is $16,643. Married, it increases by less than $6,000 to $22,411.

“It’s frustrating for us because we want to get married and tie everything together. It’s just really hard because we can’t finalize our relationship and our family,” explained Glass, who feels excluded because she is not technically a Lombardi.

“I can’t have the same last name as my daughter. It frustrates me because his ex-wife still carries his last name, so she basically has the same last name as my daughter, but I can’t. It really gets to me,” Glass said. “It bothers him because we want to be married, we want to have the ceremony and can’t just because I can’t lose my insurance.”

Because of the low-income requirements of Medicaid, the program often goes hand in hand with SSI. To initially be eligible for SSI based on disability, you have to be earning less than $1,170 per month, Ekman told The Mighty. When you get married, your spouse’s income is counted as part of your income. Together you and your partner would have to earn less than what you were making individually to still receive benefits.

“If you have high medical needs there are many plans that couldn’t cover that,” Lisa Smith Siegel a disability lawyer in Georgia, told The Mighty. “There’s also the risk if it’s tied to a job, if you lose [your job], then what do you do? I think it’s too risky to get married if you are going to lose your ability to stay alive, and need Medicaid for that.”

In addition to the SSI income requirement, any assets you have are evaluated. A single person cannot have more than $2,000 of countable resources. This includes cash, bank accounts, stocks, land, life insurance, personal property and vehicles (if you have more than one). If you are married, your countable resources increase to $3,000. There are some work incentive programs that allow you to work, Ekman explained, but you basically lose $1 in benefits for every $2 you earn, with some very small income disregard.

Another provision, called “in-kind support,” can slash any SSI benefits you may receive. If someone living with you is helping you pay rent or buy groceries, that will result in a reduction of your SSI. It does not, however, cut you off from SSI. Once your SSI benefit goes down to zero, you would no longer be eligible for Medicaid through the disability category of SSI, though some exceptions exist, Ekman said.

While maintaining her health is important, Glass’ main concern is Abbigale, who inherited brittle bone disease. Medicaid also covers Abbigale, and each month, Glass receives a SSI check as well as a check from SSDI, which are meant to cover her rent and necessities.

When it comes to SSDI, you either get your full check or you get no check, Ekman explained. If you earn more than $1,170 per month, no SSDI check will be issued for that month. Unlike SSI, SSDI does not automatically give you access to Medicaid, but it does give you access to Medicare after a 24-month waiting period.

Abbigale gets her own SSI, but how much she gets decreases based on Glass’ earnings for the month. If Glass and Lombardi were to get married, not only would Glass lose her coverage and SSI, Abbigale could too.

Because Abbigale is so young, her delicate bones are much more susceptible to damage. In her first year of life alone, Abbigale has already fractured seven bones. For Glass and her daughter, every movement is dangerous. Even something as small as a hiccup could lead to a fracture. Just this week, Glass fractured her shoulder blade by reaching for something in the middle of the night. The fracture, she said, was one of her most painful yet. But it didn’t keep her from going to work.

Like any parent, Glass wants her daughter to have a better life than she’s had. She’s enrolled Abbigale in a treatment program she hopes will give her an improved quality of life with significantly less fractures. The treatment — which requires an IV port placed in Abbigale’s chest, with medication delivered once every three months for the several years — is expensive but covered under Medicaid. Losing coverage means Abbigale faces a future similar to her mother’s, one filled with hundreds of fractures.

Right now, Abbigale is too fragile for anyone other than her father to care for her. In the hospital, nurses unfamiliar with her condition have injured her. Glass can’t hold Abbigale either; otherwise she risks fracturing her own bones. “He can’t work, and I have to work,” Glass said. “But I can’t get a job that makes enough for me to be able to provide this type of health care for us.”

Even without Lombardi working, Glass said, the two can’t get married without risking her and her daughter’s Medicaid coverage. Lombardi does pick up work, an hour here and there, when he can. But that combined with Glass’s income could get her cut off from everything. “I actually had to fight for it a few months ago because Jacob, I guess, was making too much money, and even though we’re not married, because we’re living in the same house, they wanted to combine our income,” she said. “You almost have to lie and say you’re not living together so you don’t lose everything.”

As much as Glass wants to work, it’s not worth the risk of her and Abbigale losing their health insurance:

There’s a lot of stigma around people with disabilities just wanting a free ride. It’s not that we want a free ride, it’s the fact that we really have no choice. We want to go out and be taxpayers and contribute to the economy like everybody else, but if we do, a lot of us have conditions where we’ll die if we don’t keep our medical benefits.

It’s not just Glass who is limited in her ability to work. A June report from the Bureau of Labor Statistics found that only 17.9 percent of people with disabilities were employed in 2016.

“I think our entire system keeps people living in poverty,” Stephanie Woodward, JD, director of advocacy at the Center for Disability Rights in Rochester, New York, and an organizer with ADAPT, a national grassroots organization that advocates for the rights of people with disabilities, told The Mighty. “The Americans With Disabilities Act says you have the right to work, but Medicaid says if you work too much, we’ll take your health insurance away. It’s ridiculous. We created a system where you have the right to do something but not the actual viable option to do it.”

Ultimately, Glass said she feels as though she is “living in sin.” Both Glass and Lombardi are Christians and come from religious families. Glass’ family, she said, doesn’t understand how her benefits could keep her from respecting her faith and getting married.

“I’m [with] a man and we have a child out of wedlock, and it’s against my morality, it’s against everything me and Jacob believe in,” she said. “How can we look at our daughter when she’s older and practice Christianity with her when we’re not even practicing it ourselves?”

Evaluating The Options

“I think it’s bullshit that we talk about marriage equality and that we’ve won it but we still have people with disabilities who don’t have access to marriage for fear of losing their health insurance,” Woodward said. “I don’t think you should have to choose between your right to have a family and your right to have health insurance to live.”

While it might seem impossible that there is a group of Americans who, in this day and age, can’t get married, there are few viable options that would allow people with disabilities to wed and still receive or afford their care.

Among these options is something called the “community spouse rule.” Disabled people who need long-term care or attendant services have two options, depending on their state. They can either enter a nursing home or receive a waiver from their state for home- and community-based services, which allow people with disabilities to hire attendants to help them with items related to personal care.

While the overwhelming majority of people prefer to live in their own homes, Mary Frances Price, JD, an elder lawyer in Minnesota, told The Mighty that being in a nursing home can be financially favorable to a married couple. Based on Minnesota’s state and federal laws, if someone is in a nursing home, spousal impoverishment rules apply, which would grant some income protections to the non-disabled spouse. “You really have to run the numbers both ways,” she said. “But in some cases we’ve had, it’s [financially] better to go to a nursing home.”

Despite the fact that people with disabilities were given the right to live in their communities in 1999 through the Supreme Court decision Olmstead v. L.C., Medicaid (the U.S.’s largest provider of long-term care) is only required to offer nursing home services. Not all states offer waiver programs, despite the fact they are cheaper than nursing home care.

“We can’t consider [the community spouse rule] an option, because it’s not,” Woodward said. “We believe in community integration and life and liberty for all people. We would never say it’s a viable option to lock one’s spouse up in order to keep a marriage going. What kind of marriage are you promoting at that point?”

There is also something called “spousal refusal.” In New York, Florida and Connecticut, the spouse of a disabled person can sign paperwork saying they refuse to care for their spouse, therefore, the disabled spouse should be eligible for Medicaid.

“[Spousal refusal] seems fine and dandy except you’re working with an 80-year-old couple that’s been together for 60 years and they love each other so much,” Woodward explained. “It’s heartbreaking to see these elderly couples having to grapple with the fact that the only way their spouse can get what they need is by declaring to the world that they refuse their spouse. And they won’t do it.”

Beyond refusing their spouses, some couples are going as far as getting divorced to make sure their partner can receive the care they need to survive. In her practice, Price said divorces are common: “Even long-time marriages will come in and look at what does it look like to get a Medicaid divorce and separate the assets and sort of cap the risk, the long-term risk, to the well spouse.”

“We’ve seen couples get divorced, and we’ve seen couples not get married,” Woodward added, saying she’s even seen couples get divorced after a partner gets injured and needs insurance to cover the services they need to live with their acquired disability. “They have to lower their income by getting a divorce, which is ridiculous.”

Beyond these options, there is little people can do to ensure marriage won’t penalize them. Price said a disabled person could marry a veteran and receive medical benefits, including Medicaid, as their spouse.

People with disabilities — both those born with a disability or who acquired one before the age of 26 — also have the ability to open an ABLE account, a bank account that lets people save up to $100,000 for expenses related to their disability. Not all states have ABLE programs, but some states let you open an ABLE account even if you are out of state. “There are bills that have been introduced to address that, to raise the age of disability onset for ABLE account eligibility, but that bill has not gone anywhere yet,” Ekman added.

Even if you manage to save money or accumulate assets, any money left to beneficiaries can be lost once a couple dies. Even though there might be lifetime exemptions for certain assets like your home or retirement assets up to $120,000, Price said any funds you have could be returned to the state once you and your partner die. “So after the death of both spouses, then the state of Minnesota Department of Human Services has the right of recovery as the priority creditor since the state’s medical assistance paid for the spouse, even if the person with the assets never received a dollar of medical assistance,” she explained.

For Glass, trying to navigate the system and the never-ending stress that she might lose her benefits is exhausting:

It turns you into a person you don’t want to be because you have to be able to survive. The government holds you hostage. If you’re disabled you’re expected to live on the bare, bare minimums, and it’s incredibly unfair because we’re people too. Just because we were born with a condition that means we have to live in poverty our whole life? It’s not right.

Glass said she’s fearful all of the time, recounting the story of a friend with spina bifida who lost his benefits after he started working. According to Glass, he was offered continued Medicaid coverage at $1,500 a month, a rate he couldn’t afford. “It’s frustrating, because people look at individuals with disabilities like we’re lazy and want to live off the government and we don’t want to work. That’s not true. We’re being held down, we’re being left without a choice. If we work, we can’t get health care that we desperately need.”

Some states have a Medicaid buy-in program, which lets people with disabilities work and stay on Medicaid, but not every state participates. If you earn too much where you no longer receive SSI, Ekman explained, you can continue to receive Medicaid by buying into the program by paying an income-dependent premium.

Depending on which state you live in, rules limiting assets above the $2,000 or $3,000 may still apply. “Some of the Medicaid buy-ins are actually more restrictive than traditional Medicaid eligibility,” Ekman said. “Some of them have no income or asset limits. In some states they don’t help at all. They’re not any more generous than the regular Medicaid program in many other states.” Massachusetts’ buy-in program, she added, has no asset limit, and California exempts all retirement accounts and allows beyond the $2,000 limit.

In Minnesota, there is the Medical Assistance for Employed Persons with Disabilities program (MA-EPD). “For a disabled person who can work even a nominal amount, there is a program that has some applicability,” Price explained. But the program looks different depending on what your needs are.

You can also qualify for Medicaid through the Medicaid expansion program, which looks at family income based on your modified adjusted gross income and does not consider any assets you may have. Medicaid has only been expanded in 31 states, and those covered under the expansion may no longer qualify if Medicaid’s budget is cut.

Medicaid’s Future

As it stands, any cuts to Medicaid or rollback to protections granted under the Affordable Care Act could have a disastrous impact on the lives of those living with disabilities and pre-existing conditions.

“Because such a large portion of the state budget is taken up with Medicaid and because such a significant portion of the Medicaid budget is taken up caring for people with disabilities, if you cut it by that amount, there doesn’t seem to be any world I can imagine where we don’t have some significant impacts,” Andy Slavitt, the former acting administrator of the Centers for Medicare and Medicaid Services under the Obama administration, told The Mighty.

“We’re talking about a community of people that are living on thin margins and deserve every opportunity for health and happiness that everyone else does,” Slavitt said. “It’s absolutely shameful to think that you can cut a set of services for people who are so dependent on them.”

Cutting Medicaid by 25 percent, as has been proposed, has two outcomes, Slavitt said. Either services get cut or people are dropped from the program. One of the first services to go would likely be home- and community-based services since they are optional programs, as Medicaid is only required to provide nursing home care.

Not being able to get married is just one piece of the current problem, Siegel said. If the Medicaid cuts pass, Medicaid could switch to a block grant program. Instead of letting anyone who qualifies for Medicaid join because the program is supplemented by federal dollars, states will be given a lump sum to run their programs, Siegel explained, which will lead to cuts in either enrollees or services.

“What if you get an influx of new Medicaid enrollees that qualify?” Siegel said. “Then you just have to go, ‘Well now everyone’s benefits are cut.’ If you’re counting on that to stay alive, what do you do? We’re just going to say sorry, you should have worked harder? I think it’s abominable. I can’t say enough horrible things about that idea.”

“The thing that we’re just scared to death of, on behalf of our clients, is there just not being enough dollars available to support the people who actually need it,” Price said. “It’s already difficult for people with home- and community-based needs, people with disabilities, people in nursing homes to get the services they need, and this is just going to limit the number of people who can access those services.”

If you have high medical bills and medical expenses, you really can’t replace that in the marketplace, Ekman said: “You might want to work, but the incentive to change won’t actually be there.”

This disincentive to work may only be made worse if protections for people with pre-existing conditions are not kept in place. “If we take away the ability of people with pre-existing conditions to get private coverage, then you’re never going to get people with disabilities even trying to get jobs because they know that through their employer they won’t be able to get the health insurance they need to live,” Woodward said.

These rules and regulations, not to mention Medicaid’s uncertainty, can put disabled people’s lives on hold. When asked if she sees herself ever being able to get married, Glass said no. She doesn’t even see herself being able to keep her job. “I feel trapped,” she said. “I feel because I was born with a disability I am stuck in a certain type of lifestyle I am never going to be able to get out of, and it’s just completely unfair because no one asks to be born with something that hinders their abilities in life.”

“It does seem like an impossible situation because if I don’t have Medicaid and Medicare, I probably would die,” Glass said. “I need surgery and I need very expensive healthcare and I can’t get it through work, I can’t get it anywhere else, so I’ll probably never be able to get legally married to him.”

A representative for the Centers for Medicare & Medicaid Services under the Trump administration declined to comment on specific questions regarding Medicaid and marriage.

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When Other Shoppers Take Advantage of My Disability

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Recently I had some experiences that were quite unpleasant while I was shopping. I am sure many of you who have limited mobility may have experienced the same things as me.

I was having a hard time with my breathing from my asthma, as well as being in considerable pain from my wonky knee. I have osteoarthritis in this knee, and it was very swollen and extremely painful. Walking was taking quite a bit of effort and I was relying heavily on my walking stick to get around. I needed my walking stick due to both my breathing and the pain in my knee. Movement was slow and difficult.

First, in one rather large shop, I bought some embroidery thread and made my way to the checkout queuing point. I was two steps away from the point where you queue when a lady, older than me but without apparent mobility problems dashed in front of me and went directly to the serving bench. To say that I was put out would be putting it mildly. She had quite a complex query and took ages, and I was struggling with the pain and effort to stand and wait. But what still amazes me is the apparent deliberate taking advantage of someone’s lack of mobility to push in. Was I overreacting? Did I have a right to feel miffed?

About an hour later I was carrying a basket with some strawberry plants to the checkout of a very large hardware store. I was really struggling with my walking stick, my bag and my shopping in a basket. I was in a lot of pain and wanted to get to the car to sit and wait as my husband still had a lot more shopping and looking to do.  And again, as I turned into the aisle at the empty checkout a middle-aged man rushed from the left hand side of me to the checkout in front of me. No queuing for him! I actually felt extremely affronted this time, but was not game to say anything.

I inwardly fumed as he paid for his goods. As I was paying for my strawberry plants, he interrupted with a demand about what he had been charged. This was really rude as I was being served and the poor person on the checkout had to stop, turn to him and answer the questions. He once again was pushing in to get his needs met despite the fact that I was being served. He didn’t use any manners such as “Excuse me…” He apparently just thought he had the right to take over.

He also kept his goods on the counter so I couldn’t put my plants down! I pushed his stuff across out of he way so I could put my plants into a box and that was the total limit of my resistance and ability to stand up for myself. I was left feeling like I just didn’t count. I was cross with myself for being such a wimp. Why can’t these people show a little consideration and patience? Why do they think they are more important than anyone else?

I felt really hard done by in both these situations. I was very frustrated. I also felt these two shoppers had really been ignorant and inconsiderate. Does this happen to everyone with a mobility issue? How do you deal with it? It’s like you don’t matter and you aren’t considered as equal or as deserving of respect. Your lack of mobility is a chance for these people to get ahead. I suppose it is a form of bullying. They seem to perceive you as someone of whom they can take advantage. Is it because you appear weaker?

Maybe I am wrong to feel such annoyance at these people. Maybe they are just so focused on themselves that they are oblivious to the difficulties of others. Maybe they have no empathy. Maybe it’s just the rush, rush, rush of modern life, so they think they have to be first. Maybe I expect too much of my fellow human beings. But these experiences have left me feeling rather jaded.

The best part of the day was when one of the shop assistants saw me struggling and stepped in and carried my strawberry plants for me to the lift and then to my car. This kindness, after the two other experiences, really made an impression on me. Some people are kind and will go out of their way to help you; others are selfish and take advantage of your limitations.

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Thinkstock photo by Dovapi.

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To Australian MP Pauline Hanson, From a Student With a Disability

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It was a typical Wednesday night for me as a Year 12 student, Pauline. I was caught in clouds of notes and study as I seem to always be, these days. I was taking a quick break and scrolling through my Twitter when I saw this from the absolute legend that is Kurt Fearnley.

Heaven forbid, kids experience a full spectrum of life in the classroom. They may develop empathy or tolerance. Obviously lacking within PH. — Kurt Fearnley (@kurtfearnley) June 21, 2017

This made my heart stop for a second because that phrase “spectrum of life” sounded like it had a lot to do with kids like me.

I should now take this moment to introduce you to a few facts about my life because then you might understand why comments like yours aren’t easy to shake for me. As I said, I’m a Year 12 student, doing the highest level of English possible, juggling three major works and having been at the top of all my classes since Year 7. This set of facts is merely an attempt by me to set you up with the picture of a girl with a strong academic record and a thirst for knowledge. Oh, by the way… perhaps the most relevant fact, but by no means the most defining is that I have a disability. I am a 17 year old girl in a wheelchair; I have cerebral palsy.

I did a quick Google to find context for Kurt’s comment, as while I know he is a fierce advocate of our community’s rights, he seemed unusually fired up for what I had thought was a relatively quiet news day. To be honest, Pauline, when I found the cause of his comments, not only did I feel he was remarkably publicly calm and restrained, but I felt as though the air had actually been physically ripped from my lungs.

I wondered what on earth could have possessed you to make such a misinformed statement about the lives, intellects and aspirations of children with disabilities?

When I was born, the doctors gave my parents a deeply grim diagnosis and what seemed like an unsettling and dark future. They told them I would never walk, talk or feed myself, and would be a girl stripped of all independence whose bright sparks many people would fail to notice. A well-meaning individual asked my uncle if he thought my mum and dad would place me in a home or institution, because he probably couldn’t possibly fathom how he would find the strength needed to do what my parents have done without complaint, little reward and a vast amount of energy for just shy of 18 years.

That’s a big commitment, Pauline, as is the commitment to have any child. But for a child with a disability, disorder or other greatly life-impacting condition, there are often things no able-bodied person can comprehend until they’ve been directly affected. You don’t know the depth of mine or my loved one’s lives, which have involved dodging bullets of ableist discriminatory bigotry like the ones you so casually fired a few days ago in Parliament.

You made a point of claiming that kids with disabilities drag others down, and do not have a willingness to learn, nor should they do so in a mainstream classroom. I will say there are some individuals for whom mainstream life is not as easy nor is it particularly feasible, but you have to understand Pauline, these decisions are not made lightly nor are they made with the intention of hampering the lives of others.  Many people with disabilities want inclusion and have a grit to do whatever it takes for various definitions of success and happiness to be achieved.

You seem to have a habit of tarring people with the same brush and making generalizations that can be dangerous and damaging. I have seen you do it consistently over your years in the public eye, and I unfortunately have no doubt you will do so again. But you should know, autism and other disabilities or conditions do not have a one size fits all, standard appearance. The spectrum for autism in particular is wide-ranging. I have three questions:

Do you have an iPhone or any other Apple service/device?

Have you ever used a Windows computer?

Does the theory of relativity mean anything to you?

These questions are all linked by the common thread that the visionaries behind these creations which influence so much of society’s makeup in 2017 are rumored to have been at various places on the autism spectrum. So tell me, do you still feel like people with disabilities/conditions don’t want to learn? Do you still stand by your allegations that we drag others down? Your refusal to apologize despite this highly emotive response from MP Emma Husar tells me you do.

People with disabilities face so much stigma and complexity in terms of being seen, heard, felt and represented. Your comments as a representative of our nation’s government scream ignorance and a mindset lacking in empathy and compassion. I’m going to extend the olive branch (which I’m almost certain you’ll refuse) of being quite happy to educate you and show you the reality of my life, the personal importance I place on my education and the strength of my ambition. That goes for anyone who might be reading this. I’m not ashamed to be who I am, and I won’t let people who are discriminatory and misinformed or just plain nasty make me feel any differently!

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.

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It's Time to Change the Conversation About Urinary Incontinence

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Hello, my name is Robert Sullivan. I am 34 years old, and I live with moderate to severe urinary incontinence, and occasional bowel incontinence. As of yet, I have not had a confirmed reason as to why I have this condition, other than my urologist telling me I have underactive neurogenic bladder, which means my bladder doesn’t always send me the signals telling me I’m full and I get the warning too late, or every now and then the nerves misfire and my bladder empties without warning.

I recently became very open about it, more open than my parents and others around me would like. It’s true that with my PDD-NOS (which is the old catch-all term which is now referred to as autism spectrum disorder in the DSM V), I may not always know what is a good time and place to bring up a particular topic, and my mom told me I should not go into detail about my bladder issues. Some people don’t like the idea of me being an incontinence advocate going around telling people I deal with incontinence. Society in general says shh! Don’t talk about it. We keep that in the bathroom. That’s private!

Well, I think that’s a bunch of crap (pun intended). Millions of individuals deal with incontinence, and they are of all ages, not just elderly people, and not just 40-somethings. I need adult diapers at age 34. I also have to cath four times a day because I also have retention. The stigma and private nature of this condition can leave a lot of people who deal with it feeling ashamed, isolated, and alone, and unwilling to see their doctor. Worse, it can make them feel ashamed, embarrassed and otherwise stigmatized about the use of absorbent products, when for many people whose incontinence cannot be cured (mine included), they are a fact of life. I now have no shame about my type of underwear. I applaud Depend’s recent campaign of underwareness, though I do think it’s somewhat misguided. It’s just pee and poop, people…we all do it. The bladder and bowel are just like any other part of your body. They can go wrong. Anyone can become incontinent regardless of age. A whole host of conditions can cause it. So we definitely need to change the conversation of incontinence from silence to “oh yeah, I deal with that too!” Folks need to feel not alone.

 

So you may ask, “Well, sure, we need to bring awareness, but other people are already doing this. Why do we need another article on incontinence?” Why am I doing this? Why, after several years of living with this condition and trying to hide like so many do, with society telling us we need to keep it a secret and not talk about it, am I breaking the mold and all the social rules? Why am I talking to strangers about a taboo and sensitive topic if they are willing to listen and not say “ohh TMI”? Simple: many people who deal with incontinence simply don’t know about quality products that can help manage even the most severe cases of incontinence far more effectively than certain nameless brands you might find on your local store shelf in the incontinence section. Many parents of children with disabilities struggle to find diapers that fit their children because they are too big for the biggest baby sizes but too small for the adult sizes…so where does that leave them? Many are dependent on Medicaid for their child’s supplies because they are on a tight budget, but sometimes Medicaid products are not of decent quality. I know this firsthand. Dealing with crappy diapers is the main reason I now mainly use pocket diapers.

I have decided to take matters in my own hands and found a nonprofit organization — an online diaper bank, pantry, and exchange program providing infant through adult sizes, both cloth and disposable of the highest quality to anyone who needs them regardless of Medicaid status or insurance. Quite simply, once I get established, all that will be necessary is a photo ID of the recipient and caregiver (if you are receiving diapers for a loved one you are caring for), and a letter from the recipient’s physician stating that yes indeed this individual has incontinence and is undergoing treatment for it. I used to have two separate categories: one being incontinent but otherwise not disabled and low-income, and those with incontinence and disabilities. But then I considered the cost of products, and then decided I will not consider income in regards to service. I may however ask for a very small cost share for those who can afford it and are willing to help pay for it. I also want to raise awareness and fight stigma. I am also going to start a fund for catheters for the uninsured or underinsured.

Another reason I’m breaking the mold is that I am fed up with the lack of concern over adequate bathroom facilities for those with disabilities who require the use of diapers. Imagine your son or daughter is disabled and incontinent. They need a diaper change, but the only place to change them is the floor of the bathroom. Would you want to change you infant son or daughter on the floor? I think not! But, that’s the reality of many families. I read an article on here about the public’s lack of concern over adequate facilities and I was shocked. Disability advocates have their work cut out for them. The general public is completely ignorant of the struggles families with disabilities face every day. Millions of incontinent individuals who are disabled need these facilities. It’s time for change!

So, in closing, it’s time to change the conversation, and how we view incontinence as a society. It’s the butt of jokes, but try living with it for a day and see if you are still laughing. Try coping with diaper rash and the pain it brings. And try understanding the effect it can have on self-esteem when it feels like your body betrays you. It’s not a laughing matter. But that being said, it helps for me to have a sense of humor when coping with it. But laugh with me, not at me. Please! Stop saying it’s a private matter and that only babies wear diapers. The hush-hush only makes those living with it feel worse.

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