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.


I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long. I use a mobility scooter — a small version of an electric wheelchair — and walking sticks. 

Limited as my mobility is, I’m still made to feel like a faker. I don’t look sick enough. I don’t look disabled enough. I’m too young.

Bree Hogan.1-001

If I get these comments when using medical aids, imagine what happens on the rare occurrence that I don’t use my aids and park in a disabled space, which I’m legally entitled to use. You got it. All hell breaks loose.

Just because I don’t fit society’s view of “disability” or conform to how a sick person should look and act. The much-used universal symbol for disability — the wheelchair — doesn’t always reflect reality. The definition of disability is often pigeonholed as someone requiring a wheelchair, or, at the bare minimum, crutches.

It’s so much more than that.

Painful, invisible conditions exist that entitle a person to a disability parking permit. Unfortunately, as has been demonstrated all too often of late, these invisible conditions are often assumed illegitimate by strangers. We are branded as fakers and con artists. Told over and over that we don’t look disabled enough to be entitled to a disability parking permit.

Take the recent story of Justine Van Den BorneWhen Justine, who was diagnosed with multiple sclerosis at 35, parked her car in a disabled space at a shopping center in Melbourne, Australia, she had no idea she would return to see a nasty, anonymous note stuck on her windshield that read, “Did you forget your wheelchair?” It was placed directly above her disability parking permit on the dashboard.

How could this be? Simple: Justine walked into the shopping center.

Our opinions and conclusions are greatly influenced by what we see. If someone looks healthy, they obviously can’t be too sick, right? Too often these judgments are completely wrong. I ask you this: Would you like to stop breathing on the idea that air, being mostly invisible to the naked eye, isn’t a real thing? No, I didn’t think so!

Invisible illness, ghost illness or whatever terminology you want to use, manifests internally, affecting the body from within. Many don’t understand what an invisible disability is really like for a person. Extreme fatigue, chronic pain, disorientation, dizziness, vision impairment, difficulty with mobility, cognitive issues, neuralgia…the list goes on and on.

We smile, we laugh and we get on with things, trying to live each day to the best of our abilities and be happy. Know this though: Despite my apparent healthy appearance and sunny disposition, I am legally disabled. I am battling a daily struggle. I am restricted by chronic pain, fatigue and neurological dysfunction, including numbness, weakness and intermittent spasticity in my limbs.

As I recently described in a conversation to my doctor: “My right leg has been numb from thigh to ankle for the past three weeks; my hands are tingling and short-circuiting like a failing strobe light; fatigue has knocked the wind out of my sails; pain is having a party at my expense; the nerve burn is kicking into overdrive in my arms…you want me to keep going?!”

These symptoms aren’t always obvious to the untrained observer, so even though my life is far from normal, I’m often mistaken for having a perfectly functioning body.

And I’m persecuted for it.

We need to start assuming the best of people instead of the worst. Don’t jump on a person with a disabled parking permit just because the driver or passenger isn’t in a wheelchair.

As Justine, who took the note as an opportunity to raise awareness for invisible illness, posted on Facebook: “I am sick of people like yourself abusing me on my good days for using a facility I am entitled to.”

If you see a disability parking permit but don’t see a wheelchair, don’t adopt the negative stance and assume the person has stolen it.

Yes, I understand that faking disabilities can and does occur, but I choose to believe that the number of instances is relatively low.

We need to advocate for the rights of the disabled community, but abusing people over a parking permit they are legally entitled to use is not the way to go about it.

Reporting the Ferrari double-parked across two disabled spaces without a disability parking permit might be a better place to start.

A version of this post originally appeared on Starbrite Warrior.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

My son, Caleb, is a looker. He’s only 5 years old, but at 36 pounds and nine surgeries, he’s a real head turner. That wasn’t always the case (says his mom who doesn’t believe a word of that). Even at 2 pounds soaking wet and not at all ready to brave the world, he was gorgeous to me. It took my son a few months to look like a real baby, but he came around. That scary NICU place let him out after seven months, and our days of surgeons, scrubbing in and gown-wearing were over. That feeling was actually short-lived but that’s another story.

One day, I found myself the victim of the proverbial rock and hard place. Our medical supplier called to say our coming shipment was denied due to insurance changes (non-fixable by me and with a full one day’s notice!). I’ll spare you the details and just say it was a nightmare. What does any mom in this situation do? My son’s shipment literally contained his nutrition, the one and only thing he “ate,” his tube-feeding formula. After the phone calls, tears and offers to trade kidneys, I turned to Facebook.

In my desperation and spilling of all emotions to a group of moms who would “get me,” I didn’t realize the settings of the group were open. That means all my friends saw my sad, desperate plea for help from other moms who might have extras of this particular formula.

Let me gently remind you — my horrifying problem involved my infant son not getting his only source of nutrition, his specialized formula, to my house. No, I couldn’t feed him something else, and no, I couldn’t buy it myself. A box of six cans was over $200 or more. At the time, it was the only thing he could get through his g-tube, and it was cost-prohibitive for us.

Jessica’s son

Then there was this friend… Delaware is lucky to have her. 

Remember how everyone saw my hideous post screaming to the winds for help? My friend, Jessica, saw the post and helped in a way that knocked the wind out of us.

Her son was in the NICU facing IUGR (intrauterine growth restriction), liver failure and coagulopathy (a condition that affects blood coagulation), and even so, she showed an incredibly generous and brave heart.

She saw my post and sent the information of the formula my son needed along with our address to several of her friends and family she thought could help. Explaining our situation, she told them if they could buy and send us the formula, to please do it. No yes or no answers needed to her email.  Jessica told them if financially they could help, to just do it. And did they ever.

Let me spare you the ugly-cry details, but that one Facebook interaction fed my son for months. Within two days, boxes of formula arrived at my doorstep.

The brave, generous and incredibly bold act she took upon herself to reach out to others, and even dig out of their own hearts and wallets to help my family — well, that just changed my life. I saw what the power of desire could do for the better. By the time our insurance situation was fixed, over a month had passed. Sometimes I still wonder… what would I have done otherwise?

Years later, I’m still moved that most of the kind souls who helped us in times of need didn’t know us from Adam or had never heard of my son’s medical conditions. (Caleb has short bowel syndrome, pulmonary vein stenosis and hypertension and gastroparesis.) They just sympathized with another hurting human being.

I try to make a difference wherever I go, because I remember that generosity of spirit. It was more than opening their wallet to my family; they opened their hearts to my son’s heart and literally his stomach.

Give a smile, a dollar, a handshake or hug. If it’s in your hand or heart to help, do it. Even in the most unconventional way, you could change a life. Because I’ll never forget that time my friend used Facebook to feed my son.

Caleb and Noah

Follow this journey on Hey Little Fighter.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

As I learn how to navigate this new pathway of living with disease, I’m realizing some folks naturally seem to know how to step up and be a friend in this difficult situation, while others mean well but struggle to know how best to help and be supportive. So here are four things you can do to be a good friend to someone with a disability or disease.

1. Love us.

While disability may impact who we are, we’re not defined by that disability. We are people, just the same as someone with a crooked smile or flyaway hair. See us for who we are and love us for our hearts and inner selves. There is much to love about us, from our quirks to our kindnesses, from our hobbies to our pet peeves. Yes, this still involves our challenges, but who doesn’t have challenges? When it comes right down to it, just love and care about us the way you do all your friends.

2. Learn about our conditions.

It means a lot to us when our friends take the time to read up about our disabilities or illnesses. Educating yourself about our conditions has many benefits. You’re likely to better understand why we do (or don’t do) whatever it is we’ve been doing. It might help you to know ways to offer assistance or just allow you to talk with us about what’s going on with our health. If you have a question about our condition, ask us. The gesture of learning about what ails us is touching and shows us how much you love us.

3. Listen to us.

Sometimes we just want to talk about our troubles. These may or may not involve our medical problems, but if they do, please listen. It can be hard to find someone to discuss things with when your health is dicey. Pity and dismay isn’t really the kind of reaction we’re seeking. Neither is it helpful to be assured it must be nothing when it’s something that’s important to us. Mostly, we just want a friend who will listen and give us their attention and understanding. We want a friend who will make no more of what we say than we do. Sharing our challenges isn’t a plea for being coddled — honest! Our feelings need to come out, and having a safe person to confide in can mean the world.

4. Live your lives with us.

What do you like to do? We probably like to do that, too. How do you live your life? We do the same things. These are opportunities to connect, to spend time together and to offer the company of a friend. Sure, we might regretfully decline an invitation, but that doesn’t mean you shouldn’t invite us the next time. Or the time after that. Even small things are worth doing together. A movie night on a couch can be just as fun and fulfilling as a movie night at the theater — maybe more so. Spending time in the kitchen laughing and talking is absolutely invaluable. Live your lives with us and include us even if you aren’t sure what we’ll say yes to. It will mean so much that you have included us.

Perhaps it takes a little more effort to be friends with someone dealing with a health issue. Or maybe once you begin, you find it’s easier than you thought. There really isn’t a secret formula except to just be a friend. We’ll do the same for you. When all else fails, let’s talk. Let’s plan. Ask us how to help, and I bet any of us would be happy to share our thoughts and ideas. Friends are jewels in life who are to be treasured, especially in times of trouble. So let’s be friends!

Follow this journey on Lupus Rhythms.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

It feels so hard… at first. It feels like the purest definition of overwhelming because it is overwhelming: the beginning of a life lived without what may feel like one of the foundational foods of your family’s diet.

Maybe your child has just been diagnosed with a food allergy. Maybe it’s celiac disease, lactose intolerance or something rarer and harder to explain. Whether it’s a lifelong restriction or a temporary one, the thought of reading labels, re-thinking your family’s mealtimes and being vigilant about whatever your child puts in her mouth seems like a lot to manage right now.

The first thing you might want to do is start searching for replacements for what your child is not allowed to eat. You may want to begin with the one-word suffix “-free.” Gluten-free, dairy-free, egg-free, nut-free – that “-free” word will initially pepper every corner of your consciousness as it plasters itself across the labels of the foods in your pantry and refrigerator. However, before you look for those items, I suggest a different approach:

First, look for the things in your existing diet that already work.

When my already-vegetarian daughter was asked to follow an elimination diet that completely removed dairy, eggs, soy, nuts and wheat from her life, it seemed there was nothing left. However, when we began to look at our average week, there were several meals that worked already. Beans and rice were fine, for example. So was our favorite chickpea soup. Every fruit, every vegetable. We began to marvel out loud at how many things could be made from potatoes.

When I realized there was a place to start, I took out a notebook and opened my cupboards. No matter the item, if it was something she could eat on this diet, I wrote it down: canned mushrooms, lentils, all our spices, artichoke hearts, quinoa, five kinds of rice, Jello mix, sugars, pickles, on and on. I listed every single “yes” in my pantry, and then I moved onto my refrigerator, where I found every vegetable and fruit, salsa and hummus, jam.

From there, I moved onto the meals we could recreate with only minor tweaks. Pasta with butter and cheese was recreated with gluten-free pasta, olive oil and fresh herbs. Many of our favorite morning cereals could stay once we found a nondairy milk we liked. With a quality thermos for her lunchbox, every dinner I’d discovered already worked could become the next day’s lunch

By the time I was done, I had three pages of “yes” items in my notebook. I sat on the floor of my kitchen with a stack of sticky notes and every cookbook I owned. I labeled promising recipes – yellow stickies for the ones I could make without a trip to the store and white stickies for the ones I could make once I’d purchased some substitute specialty items.

Then, finally, I sat down at my computer and began searching for substitutions. I began with the things I needed to complete the recipes we already liked, searching for the best gluten-free pasta, the most effective egg replacers, something that would approximate soy sauce. I joined some discussion groups and asked questions. I started a folder of “Elimination Diet” bookmarks in my web browser.

Within three days, I had a game plan: a list of meals to try, a cabinet full of new experimental items, a mindset shift that made an enormous difference for our family.

In the end, these diets are still hard. They still require vigilance and planning, and as a parent, you still need to know – and memorize every variation of – the foods on the “no” list. However, starting from the perspective of what does work makes an enormous difference.

Hang in there, parents. You can do it.


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These parents are trying to send Lego a message the company can’t ignore.

Toy Like Me is a parent-run social media campaign calling on the toy industry to produce toys with disabilities. The group, formed in April, started a petition asking Lego to create a set that featured figures in wheelchairs in a setting other than the hospital. The petition got nearly 19,000 signatures, but the organization says their request was ignored. Now, with the holidays approaching, they’re trying again.

Toy Like Me has submitted to the Lego Ideas platform, a place where people can upload and vote for new Lego design ideas, a set of holiday-themed figures in wheelchairs. The figures come with accessories like Santa beards, wands and white canes. It’s called “Christmas Wands ‘n’ Wheels.”

Courtesy of Toy Like Me

The organizers are urging people to visit the ideas platform and vote to make the toy set a reality. According to the Lego website, if a project receives 10,000 supporters, it automatically qualifies for a project review by a board of set designers and marketing representatives.

Courtesy of Toy Like Me

“For a child with an impairment it would be hugely affirming to be reflected by a brand like Lego,” Toy Like Me co-founder Rebecca Atkinson said in a press release. “It says that the brand is behind them, believes in them and that they are part of the mainstream. For children without a disability, seeing a brand like Lego celebrate human difference helps to create a more positive attitude when they meet someone with an impairment in real life.”

Courtesy of Toy Like Me

Toy Like Me says Lego has yet to respond to the campaign’s multiple challenges on TV, radio, email and social media.

Courtesy of Toy Like Me

In July, Lego released a Duplo Community People Set, a collection intended to educate young children about a variety of different people and occupations, featuring a person with a disability. The figure was an elderly man in a wheelchair, which Toy Like Me says furthers misunderstanding about disability as well as the stereotype that it’s something that only affects the elderly.

Courtesy of Toy Like Me

“Lego has huge cultural sway,” Atkinson said, “and the power to really change perceptions. Children look up to global brands like Lego and learn through them. But if these brands don’t include positive disability representation, then what are they teaching children? That exclusion is OK in real life?”

Courtesy of Toy Like Me

The organization hopes Lego will soon be the latest to join the ranks of Playmobil, Orchard Toys, Lottie and Makie dolls, who have already answered the campaign call for positive disability representation in toys. Playmobil is now working to produce a line of characters that positively represent disability, to be for released in 2016/17.

Go here to vote for “Christmas Wands ‘n’ Wheels” on Lego’s idea platform.

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