Karin Willison

@karin-willison | staff
I'm a Senior Editor at The Mighty, working with stories about disability, chronic illness, parenting, and more. In my spare time, I'm a disability travel blogger -- I road trip around the USA with my service dog and share my experiences. (She/her)

How My Disabilities Are Affecting Me as a Writer

I moved to self-employment back in 2000 and it eventually became the only way I could work, in my own chair, in my own office, in my own home. I was grateful that I had managed to provide some income even though as the primary wage earner, it was never enough. I haven’t felt like writing so much in the last years as my brain fog increased, mostly due to the mast cell activation syndrome. Once the brain fog started clearing up after I got medications, I was cheered, but during the pandemic, it’s been really hard. I always have something to say but my writing has always depended on writing in my head first. I never lost that ability but lost the ability to remember what I wrote in my head! That has continued to improve but has never reached the level I was able to manifest years ago. And now, with less brain fog but continuing issues with the myasthenia gravis, I found out today another ability of mine has truly been damaged. Proofreading. One of the tools in a writer’s toolbox is to remove oneself enough to proof and fix errors. As a former reporter, English teacher, and editor, it’s just who am, what I’ve always been able to do. Or maybe who I was. I wrote an article today for an upcoming publication, read it over at least three times, read it out loud to myself once, and then read it out loud to my husband. Hubby’s listening means I pay more attention to the words I read and I do find my “last errors” that way. After the final reading, I copied and pasted it from Word to email in my Chrome browser. That highlighted even more errors that I had missed. I sat back stunned. I no longer can even effectively proofread my own writing without massive effort and time. So this is a mea culpa, an apology, and a lament. All my writing errors are mine. I own them. I am a disabled writer, not a writer with a disability (or two) but a disabled writer.  I can only hope with more medicine, more effective medicine, I can regain that ability. Some bit of hope today. Maybe someday I’ll be just a writer with disabilities once again.

Social Security Disability Fraud Is Rare, Unlike These Common Scams

“Disabled people have it so easy. They live off our tax dollars, buying Xboxes while the rest of us have to work and pay for their lifestyle. Most of them are faking and don’t deserve it.” — too many people on Facebook If I could only bust one widespread myth about life with a disability, it would be this one. For some reason, the general public believes that receiving Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) (and similar benefits in other countries) is a ticket to the high life. They imagine hordes of scammers rolling in dough every month — people who are completely healthy, or just have mild health conditions and could work but don’t want to. But this could not be further from the truth. In reality, less than one percent of SSDI claims are estimated to be fraudulent, a vanishingly small number. Qualifying for federal and/or state disability programs in the United States is a grueling process that takes years, unless you have a terminal illness or one of a very few conditions that qualify for “presumptive eligibility.” Most applicants are initially rejected, which means they must appeal, submit volumes of medical documentation, see multiple doctors, and sometimes even appear before a judge in the hope of being approved. And all this for what? According to the Center on Budget and Policy Priorities, fewer than four out of 10 SSDI applications are ultimately approved, and 90% of beneficiaries receive less than $2,000 per month. The average SSDI payment as of 2022 is $1,358 per month. People who have never worked or don’t have enough work credits get SSI instead — a whopping $841 per month. Could you live, let alone live well, on $841 per month, or even $1,358 per month? No one is getting rich because they receive disability benefits. Of course, some people occasionally fake a disability for personal gain. They might do something like use Grandma’s parking placard at the grocery store or rent a wheelchair to skip the lines at Disney World. But those are low-stakes, low-risk, and low-effort endeavors, not a years-long dedication to fooling doctors and employees of a massive government agency. Such instances do occur — the Dee Dee and Gypsy Rose Blanchard case, for example — but they are incredibly rare. What is far more common is people desperately needing disability funding and services and having to fight for years just to get a meager monthly payment and spend their lives in poverty. The persistent myth of scammers in disability programs must be addressed because it hurts disabled people who struggle to get the support they need. Most people respond by citing facts and statistics like I just did to show how hard it is to get benefits and how lousy they actually are if you do get them. But I think it’s time to try a new tactic. By talking about the scams we encounter every day, we can demonstrate why faking a disability to get Social Security simply isn’t worthwhile to the vast majority of criminals. Here are five common scams that are easier and far more lucrative than pretending to have a disability. 1. The Nigerian Prince scam. We’ve all gotten one if not dozens of these emails. There are five in my spam folder right now. A Nigerian prince, a banker from Ghana, or a director of a charity for orphans has millions of dollars they can’t access — but you can help. These are known as “advance fee” scams, because the scammer convinces you to pay a fee with the promise of a much higher return, then takes your money and disappears. Have you ever wondered why these emails are so poorly written? You would think that con artists would try harder to make their story seem believable, or at least run spell check. Who would fall for such an obvious scam? Some research shows that fraudsters make their messages seem shady on purpose. They don’t want to waste their time on people who might fall for the initial email but spot the scam before sending the money. They want the most gullible marks they can find, so creating a scam that’s obviously a scam to almost everyone leaves them only with those to whom it’s not obvious. And sadly, that group is mostly elderly folks and people with intellectual disabilities. Take note of that, because you’ll see it again. 2. Pretending to play an instrument. A couple of weeks ago, I was taking my dog to the veterinarian when I saw a young man playing the violin for tips in the parking lot. Even though the university in my town has one of the top music programs in the country, and we have street performers here, something felt off about it. Later that day, I found out via social media that it was a scam. These individuals are not actually playing an instrument; they are pretending to play to recorded music. They are not homeless or down on their luck, either. Most are part of organized traveling groups that engage in scams for profit, often using their kids to drum up sympathy. What’s genius about this scam is that aside from minor trespassing or panhandling violations, it’s not illegal. If someone wants to toss a few dollars to someone they believe is a struggling but extremely talented musician, that’s their choice. Unlike scamming Social Security, which is punishable by massive fines and prison time if you even manage to pull it off, pretending to play an instrument is easy, brings in tax-free cash, and at worst you’ll get a ticket or spend a night in jail. Every time I’ve told someone about this scam since I witnessed it, they readily believe that the violin playing is fake, but struggle to accept that the “player” isn’t genuinely in need of help. I wish more people would extend the same benefit of the doubt to folks who need disability benefits. 3. Running a rigged carnival game. If you’ve ever tried to impress a date at the county fair by winning a stuffed animal for them, you’ve discovered that carnival games are a lot harder to win than they look. From visual tricks to exploiting basic principles of physics, these games are carefully designed to guarantee that the operator will always earn a profit. In the video below, engineer Mark Rober explains how carnival scams work and tests some at a local boardwalk. Rober and his colleagues collected data showing that the carnival they were studying grosses about $20,000 per day from games. That means they bring in almost $4,000 more in one day than an average SSDI recipient makes in a full year, and twice what SSI recipients make in a year. And once again, this scam is legal. In fact, most of us have been conned at a fair or amusement park and had fun in the process, even knowing the odds are stacked against us. Back in the day, one of the only ways to support yourself if you had a disability was to join the circus. Apparently, it’s still a better-paying option than government benefits — and both easier and more profitable than faking a disability. 4. “Catfish” romance scams. Catfishing is a slang term for pretending to be someone you’re not online, particularly on dating websites. Some people just catfish as a prank, but far too many do it to steal from lonely, vulnerable people who are looking for love. This twisted scam often ensnares seniors and people with disabilities who have retirement funds or legal settlements the scammer can loot. But even those who don’t have much money may be victimized, as professional catfishers can have several marks “on the hook” at the same time. Some online romance scammers also live in countries where $50 or $100 is more than most people earn in a month. One of my personal care assistants previously worked for a disabled woman who had fallen for one of these scams. She had met her “boyfriend,” who claimed to be a military doctor, online, and would send him money. No matter how many times the woman’s grown children tried to explain that he wasn’t who he said he was, she refused to believe it. The emotional manipulation inherent in romance scams makes them especially cruel and damaging to victims when they finally recognize and accept the truth. You can learn more about romance scams and how to protect yourself on the FTC website. 5. Scamming or exploiting a disabled person to steal their Social Security benefits. Scamming to get Social Security benefits is rare, but defrauding people who receive Social Security is disturbingly common. The Social Security website even has a page about how to protect yourself from scams. If you or a loved one receives disability or retirement payments, please read it. People who manage to get on SSDI or SSI often live in fear of losing their benefits because of a paperwork error, because they earned or received too much money from another source, or because someone falsely accused them of fraud. Scammers know this and use it to their advantage. Identity thieves will call and accuse recipients of fraud or even threaten them with arrest, frightening them so they are not thinking clearly. Then they’ll offer to look into the issue and ask to “confirm” the person’s Social Security number and other personal information. Unfortunately, such scams are far from the worst-case scenario when it comes to stealing disability benefits. In 2011, four adults with mental disabilities were found chained in a Philadelphia basement, imprisoned by their supposed caregivers who were living off their SSI payments. And then there was boarding house owner Dorothea Puente, who appeared to be a harmless grandmother but was actually a calculating serial killer. She took in men with mental illnesses and disabilities, murdered them, buried their bodies on her property, and kept collecting their Social Security checks. You can also learn more about her in the recent Netflix series “Worst Roommate Ever.” As these scams demonstrate, con artists are after one thing: an easy mark. The Social Security Administration is about as far from an easy mark as it gets. But sadly, people with disabilities are frequently victims of fraud — and the scams I listed above are just the tip of the iceberg when it comes to criminals targeting our community. So let’s stop accusing people who depend on SSI and SSDI of faking and start going after the real scammers.

Moving to a Different State With a Disability: 5 Things to Consider

When you have a physical disability, moving to another state or part of the country is complicated. There are so many reasons why we can’t just pick up and move to another place that able-bodied people don’t think about, and so many things we have to consider when we do have a possibility of moving. And yet, our lives as people with disabilities are often fundamentally shaped by where we live. Moving can bring us closer to loved ones and give us access to better disability services and supports — but it can also do the opposite. As a wheelchair user who has moved eight times to and within four different states, here are five things to consider before moving to a different U.S. state and/or region when you have a disability. 1. How will moving to a new state affect my Medicaid health care and home and community-based services? Many people with physical and/or developmental disabilities receive home and community-based services (HCBS) through Medicaid, such as in-home care, respite, day programs, group home placement, job training, and funding for home modifications. Most of these services are only available through Medicaid — they are not covered by private insurance or Medicare (federal insurance). Medicaid is a state program that provides health care to people who are low-income and/or disabled. Medicaid exists in every state, but it’s different in every state, often drastically different. Some states even call it something different, such as Medi-Cal in California. Medicaid does not transfer from state to state. If you move to another state, you have to apply for Medicaid in that state, and will inevitably experience a gap in services. So if you need in-home care, you’ll have to pay out-of-pocket for the months it will take to establish services in a new state. Getting Medicaid disability-related services, or services of the quality you had in a different state, is not guaranteed. States are required by the federal government to offer Medicaid, but they have a lot of choices about the home and community-based services they offer and how many people are eligible for those services. Each state has its own Medicaid waivers with different rules and limitations. This means you could qualify for in-home care in one state but not another — or you might qualify, but the new state has limited funding set aside for home care, and you’ll be put on a years-long waiting list. I run a Facebook group for discussing Medicaid home care waivers and have had many people join seeking help when they moved to another state and found themselves or a loved one unable to get services they previously received. Although the “best” and “worst” states depend somewhat on the type of services you need, you should be aware that the currently-popular destinations Texas and Florida both have decade-plus waiting lists for home care and developmental disability waivers. If you need Medicaid HCBS, please do lots of research before you move. Join online communities and talk to people with disabilities/family members who live in the state and find out what services are like there. Some people choose to move to a different state specifically for access to better Medicaid HCBS. If you or a loved one has been stuck on a waiting list for years or can’t get adequate services where you are, moving may be the only solution. 2. Will I have access to quality health care and medication in the city/state where I want to move? Moving to a new city or state often means changing health insurance, too. It’s essential to check before changing plans to make sure your doctors and prescriptions will be covered. If you currently have health care under a Medicaid expansion program, or think you or a loved one might need Medicaid in the future, be aware that not all states have expanded Medicaid. You can see an updated list with a map here. Although not all states with expanded Medicaid have excellent disability services, the reverse is generally true — the states with the longest waiting lists and least-funded programs are the non-expansion states. If you live with a rare or complex medical condition, access to specialists is critical. Connect online with others who have the same condition as you to see which doctors they recommend in the new city/state. Be sure to call those doctors before you move to make sure they are accepting new patients and that they take your insurance. 3. Will I be able to find disability-accessible housing in a new city if I move? Housing is often the most critical and limiting factor for people with disabilities who want to move to another city or state. There is a nationwide shortage of affordable, accessible housing — but that doesn’t mean moving is impossible. You just need to plan carefully. If you need affordable housing, a Section 8 Housing Choice Voucher can enable you to rent from a landlord — including a family member, if you have a disability. There is typically a waiting list for vouchers, but it can range from weeks to decades depending on the area. If you need a voucher, find out if the waiting list in the new area is open, and how long people typically wait to receive a voucher. You may even want to consider moving to an area with a short waiting list rather than waiting 5+ years for a voucher in a big city. Once you receive a voucher, you must live in that jurisdiction for one year — but after that, you can port your voucher anywhere else in the country. See this guide for more information. Whether you’ll be renting or buying, make a list of everything you require for housing to be accessible to you. This will be different for each person. Do you need to live close to public transportation, or do you prefer a quiet rural or suburban area without bright city lights and noise? Do you need a yard for a service dog, or a condo or apartment with no yard to maintain? Do you need a roll-in shower or an adapted kitchen? If you have a mobility disability and are planning to buy a home, research the common styles of residential architecture in the area to see whether they lend themselves to accessibility. For example, in California, many houses are single-story with just a step or two, and have fairly open floor plans. These houses could be made wheelchair-accessible fairly easily. However, in the Midwest, multi-story homes are popular; these are difficult and costly to remodel for accessibility. Often, styles vary by neighborhood as well, so once you determine which parts of town have the housing type you need, you can narrow your search. 4. How accessible and inclusive are schools and universities in the area? If you have a child with a disability, you want the best educational opportunities for them — which often means inclusion in classrooms with their typical peers. Although IDEA requires that children with disabilities be educated in the least restrictive environment, in practice, many kids are segregated and many parents must fight for their right to inclusion. In some areas, these battles have been won and lasting change has been at least somewhat achieved, while in others, there’s still a long way to go. Before you move, do some research on the school districts and neighborhood schools. The usual measurements for good schools may be less relevant in your situation, so find parents of kids with disabilities who live in the area to get their recommendations. Then narrow down your home search to neighborhoods in those districts. If you or your child may pursue higher education in the future, look into accessibility at local colleges and universities. Is the campus wheelchair accessible? Do they offer online classes? Do they have a robust program to provide support to students with learning and/or physical disabilities? Although some young adults with disabilities do move away for college, it’s nice to have a local option. 5. How will the weather and future effects of climate change affect disability accessibility and my health? If you’re not sure of the best place to move for your disability, or you’re trying to choose between a couple of options, the weather could be a deciding factor. Weather can have a direct impact on our health, reducing or exacerbating symptoms. For example, many people with arthritis and other chronic pain conditions find that they have more mobility and less pain living in a dry, warm climate such as Southern California, Arizona, or New Mexico. Cold tends to increase pain, but barometric pressure changes in warm, humid climates such as the U.S. South can also contribute to chronic illness flare-ups. Weather can also affect the accessibility of our environment. If you live in an area with heavy snowfall, it may be difficult to leave your home in the winter — or for family or caregivers to get to you if you need help. Some cities and towns do a better or worse job shoveling sidewalks; be sure to look into this before moving if you use a wheelchair or other mobility aid and need to get around without a car during the winter. Every place in the U.S. is prone to natural disasters of some kind, so it’s important to know the hazards in a new area before you move. Often, there are ways to minimize or reduce your risk. When looking at a home to buy or rent, check to see if it is in a hurricane, flood, or fire zone. You may want to live near the beach in Florida, but considering the time and cost of finding and/or remodeling a home for accessibility, choosing an apartment or house several miles inland is a safer option. Develop a safety plan in case you need to evacuate or shelter in place due to a natural disaster. If you can’t drive, who will help you leave? Do you have non-perishable food on hand and a backup battery to charge or power your essential medical equipment? If you are unable to prepare or protect yourself in the event of a disaster that is common in an area, you may want to consider a different place to live. And finally, consider the potential impact of climate change. Hurricanes and thunderstorms are becoming more severe as temperatures increase, and scientists predict that sea levels will rise, flooding many coastal areas. This may sound like a far-off nightmare, but it could happen within the lifetimes of many young and middle-aged people with disabilities. Previous disasters such as Hurricane Katrina have demonstrated that people with disabilities and seniors are often forgotten, neglected, and left behind in a crisis. We have to think about the future, because the future won’t think about us. Resources for Moving With a Disability How to Get On — a self-advocacy guide for getting the disability services you need Medicaid Consumer-Directed Home Care Waivers State by State Guide Medicaid Waiver Waiting List State by State Chart Status of State Medicaid Expansion Decisions: Interactive Map How to Port Your Section 8 Voucher Partnership for Inclusive Disaster Strategies — organization advocating for better emergency services for people with disabilities As someone with a disability who has spent the past six years wanting to move and weighing different options, I know that there is no perfect place to live, no fully-accessible and affordable disability paradise. But if we set priorities and work steadily towards our goals, we can improve the quality of our lives by moving to a place that better meets our needs.

Moving to a Different State With a Disability: 5 Things to Consider

When you have a physical disability, moving to another state or part of the country is complicated. There are so many reasons why we can’t just pick up and move to another place that able-bodied people don’t think about, and so many things we have to consider when we do have a possibility of moving. And yet, our lives as people with disabilities are often fundamentally shaped by where we live. Moving can bring us closer to loved ones and give us access to better disability services and supports — but it can also do the opposite. As a wheelchair user who has moved eight times to and within four different states, here are five things to consider before moving to a different U.S. state and/or region when you have a disability. 1. How will moving to a new state affect my Medicaid health care and home and community-based services? Many people with physical and/or developmental disabilities receive home and community-based services (HCBS) through Medicaid, such as in-home care, respite, day programs, group home placement, job training, and funding for home modifications. Most of these services are only available through Medicaid — they are not covered by private insurance or Medicare (federal insurance). Medicaid is a state program that provides health care to people who are low-income and/or disabled. Medicaid exists in every state, but it’s different in every state, often drastically different. Some states even call it something different, such as Medi-Cal in California. Medicaid does not transfer from state to state. If you move to another state, you have to apply for Medicaid in that state, and will inevitably experience a gap in services. So if you need in-home care, you’ll have to pay out-of-pocket for the months it will take to establish services in a new state. Getting Medicaid disability-related services, or services of the quality you had in a different state, is not guaranteed. States are required by the federal government to offer Medicaid, but they have a lot of choices about the home and community-based services they offer and how many people are eligible for those services. Each state has its own Medicaid waivers with different rules and limitations. This means you could qualify for in-home care in one state but not another — or you might qualify, but the new state has limited funding set aside for home care, and you’ll be put on a years-long waiting list. I run a Facebook group for discussing Medicaid home care waivers and have had many people join seeking help when they moved to another state and found themselves or a loved one unable to get services they previously received. Although the “best” and “worst” states depend somewhat on the type of services you need, you should be aware that the currently-popular destinations Texas and Florida both have decade-plus waiting lists for home care and developmental disability waivers. If you need Medicaid HCBS, please do lots of research before you move. Join online communities and talk to people with disabilities/family members who live in the state and find out what services are like there. Some people choose to move to a different state specifically for access to better Medicaid HCBS. If you or a loved one has been stuck on a waiting list for years or can’t get adequate services where you are, moving may be the only solution. 2. Will I have access to quality health care and medication in the city/state where I want to move? Moving to a new city or state often means changing health insurance, too. It’s essential to check before changing plans to make sure your doctors and prescriptions will be covered. If you currently have health care under a Medicaid expansion program, or think you or a loved one might need Medicaid in the future, be aware that not all states have expanded Medicaid. You can see an updated list with a map here. Although not all states with expanded Medicaid have excellent disability services, the reverse is generally true — the states with the longest waiting lists and least-funded programs are the non-expansion states. If you live with a rare or complex medical condition, access to specialists is critical. Connect online with others who have the same condition as you to see which doctors they recommend in the new city/state. Be sure to call those doctors before you move to make sure they are accepting new patients and that they take your insurance. 3. Will I be able to find disability-accessible housing in a new city if I move? Housing is often the most critical and limiting factor for people with disabilities who want to move to another city or state. There is a nationwide shortage of affordable, accessible housing — but that doesn’t mean moving is impossible. You just need to plan carefully. If you need affordable housing, a Section 8 Housing Choice Voucher can enable you to rent from a landlord — including a family member, if you have a disability. There is typically a waiting list for vouchers, but it can range from weeks to decades depending on the area. If you need a voucher, find out if the waiting list in the new area is open, and how long people typically wait to receive a voucher. You may even want to consider moving to an area with a short waiting list rather than waiting 5+ years for a voucher in a big city. Once you receive a voucher, you must live in that jurisdiction for one year — but after that, you can port your voucher anywhere else in the country. See this guide for more information. Whether you’ll be renting or buying, make a list of everything you require for housing to be accessible to you. This will be different for each person. Do you need to live close to public transportation, or do you prefer a quiet rural or suburban area without bright city lights and noise? Do you need a yard for a service dog, or a condo or apartment with no yard to maintain? Do you need a roll-in shower or an adapted kitchen? If you have a mobility disability and are planning to buy a home, research the common styles of residential architecture in the area to see whether they lend themselves to accessibility. For example, in California, many houses are single-story with just a step or two, and have fairly open floor plans. These houses could be made wheelchair-accessible fairly easily. However, in the Midwest, multi-story homes are popular; these are difficult and costly to remodel for accessibility. Often, styles vary by neighborhood as well, so once you determine which parts of town have the housing type you need, you can narrow your search. 4. How accessible and inclusive are schools and universities in the area? If you have a child with a disability, you want the best educational opportunities for them — which often means inclusion in classrooms with their typical peers. Although IDEA requires that children with disabilities be educated in the least restrictive environment, in practice, many kids are segregated and many parents must fight for their right to inclusion. In some areas, these battles have been won and lasting change has been at least somewhat achieved, while in others, there’s still a long way to go. Before you move, do some research on the school districts and neighborhood schools. The usual measurements for good schools may be less relevant in your situation, so find parents of kids with disabilities who live in the area to get their recommendations. Then narrow down your home search to neighborhoods in those districts. If you or your child may pursue higher education in the future, look into accessibility at local colleges and universities. Is the campus wheelchair accessible? Do they offer online classes? Do they have a robust program to provide support to students with learning and/or physical disabilities? Although some young adults with disabilities do move away for college, it’s nice to have a local option. 5. How will the weather and future effects of climate change affect disability accessibility and my health? If you’re not sure of the best place to move for your disability, or you’re trying to choose between a couple of options, the weather could be a deciding factor. Weather can have a direct impact on our health, reducing or exacerbating symptoms. For example, many people with arthritis and other chronic pain conditions find that they have more mobility and less pain living in a dry, warm climate such as Southern California, Arizona, or New Mexico. Cold tends to increase pain, but barometric pressure changes in warm, humid climates such as the U.S. South can also contribute to chronic illness flare-ups. Weather can also affect the accessibility of our environment. If you live in an area with heavy snowfall, it may be difficult to leave your home in the winter — or for family or caregivers to get to you if you need help. Some cities and towns do a better or worse job shoveling sidewalks; be sure to look into this before moving if you use a wheelchair or other mobility aid and need to get around without a car during the winter. Every place in the U.S. is prone to natural disasters of some kind, so it’s important to know the hazards in a new area before you move. Often, there are ways to minimize or reduce your risk. When looking at a home to buy or rent, check to see if it is in a hurricane, flood, or fire zone. You may want to live near the beach in Florida, but considering the time and cost of finding and/or remodeling a home for accessibility, choosing an apartment or house several miles inland is a safer option. Develop a safety plan in case you need to evacuate or shelter in place due to a natural disaster. If you can’t drive, who will help you leave? Do you have non-perishable food on hand and a backup battery to charge or power your essential medical equipment? If you are unable to prepare or protect yourself in the event of a disaster that is common in an area, you may want to consider a different place to live. And finally, consider the potential impact of climate change. Hurricanes and thunderstorms are becoming more severe as temperatures increase, and scientists predict that sea levels will rise, flooding many coastal areas. This may sound like a far-off nightmare, but it could happen within the lifetimes of many young and middle-aged people with disabilities. Previous disasters such as Hurricane Katrina have demonstrated that people with disabilities and seniors are often forgotten, neglected, and left behind in a crisis. We have to think about the future, because the future won’t think about us. Resources for Moving With a Disability How to Get On — a self-advocacy guide for getting the disability services you need Medicaid Consumer-Directed Home Care Waivers State by State Guide Medicaid Waiver Waiting List State by State Chart Status of State Medicaid Expansion Decisions: Interactive Map How to Port Your Section 8 Voucher Partnership for Inclusive Disaster Strategies — organization advocating for better emergency services for people with disabilities As someone with a disability who has spent the past six years wanting to move and weighing different options, I know that there is no perfect place to live, no fully-accessible and affordable disability paradise. But if we set priorities and work steadily towards our goals, we can improve the quality of our lives by moving to a place that better meets our needs.

Moving to a Different State With a Disability: 5 Things to Consider

When you have a physical disability, moving to another state or part of the country is complicated. There are so many reasons why we can’t just pick up and move to another place that able-bodied people don’t think about, and so many things we have to consider when we do have a possibility of moving. And yet, our lives as people with disabilities are often fundamentally shaped by where we live. Moving can bring us closer to loved ones and give us access to better disability services and supports — but it can also do the opposite. As a wheelchair user who has moved eight times to and within four different states, here are five things to consider before moving to a different U.S. state and/or region when you have a disability. 1. How will moving to a new state affect my Medicaid health care and home and community-based services? Many people with physical and/or developmental disabilities receive home and community-based services (HCBS) through Medicaid, such as in-home care, respite, day programs, group home placement, job training, and funding for home modifications. Most of these services are only available through Medicaid — they are not covered by private insurance or Medicare (federal insurance). Medicaid is a state program that provides health care to people who are low-income and/or disabled. Medicaid exists in every state, but it’s different in every state, often drastically different. Some states even call it something different, such as Medi-Cal in California. Medicaid does not transfer from state to state. If you move to another state, you have to apply for Medicaid in that state, and will inevitably experience a gap in services. So if you need in-home care, you’ll have to pay out-of-pocket for the months it will take to establish services in a new state. Getting Medicaid disability-related services, or services of the quality you had in a different state, is not guaranteed. States are required by the federal government to offer Medicaid, but they have a lot of choices about the home and community-based services they offer and how many people are eligible for those services. Each state has its own Medicaid waivers with different rules and limitations. This means you could qualify for in-home care in one state but not another — or you might qualify, but the new state has limited funding set aside for home care, and you’ll be put on a years-long waiting list. I run a Facebook group for discussing Medicaid home care waivers and have had many people join seeking help when they moved to another state and found themselves or a loved one unable to get services they previously received. Although the “best” and “worst” states depend somewhat on the type of services you need, you should be aware that the currently-popular destinations Texas and Florida both have decade-plus waiting lists for home care and developmental disability waivers. If you need Medicaid HCBS, please do lots of research before you move. Join online communities and talk to people with disabilities/family members who live in the state and find out what services are like there. Some people choose to move to a different state specifically for access to better Medicaid HCBS. If you or a loved one has been stuck on a waiting list for years or can’t get adequate services where you are, moving may be the only solution. 2. Will I have access to quality health care and medication in the city/state where I want to move? Moving to a new city or state often means changing health insurance, too. It’s essential to check before changing plans to make sure your doctors and prescriptions will be covered. If you currently have health care under a Medicaid expansion program, or think you or a loved one might need Medicaid in the future, be aware that not all states have expanded Medicaid. You can see an updated list with a map here. Although not all states with expanded Medicaid have excellent disability services, the reverse is generally true — the states with the longest waiting lists and least-funded programs are the non-expansion states. If you live with a rare or complex medical condition, access to specialists is critical. Connect online with others who have the same condition as you to see which doctors they recommend in the new city/state. Be sure to call those doctors before you move to make sure they are accepting new patients and that they take your insurance. 3. Will I be able to find disability-accessible housing in a new city if I move? Housing is often the most critical and limiting factor for people with disabilities who want to move to another city or state. There is a nationwide shortage of affordable, accessible housing — but that doesn’t mean moving is impossible. You just need to plan carefully. If you need affordable housing, a Section 8 Housing Choice Voucher can enable you to rent from a landlord — including a family member, if you have a disability. There is typically a waiting list for vouchers, but it can range from weeks to decades depending on the area. If you need a voucher, find out if the waiting list in the new area is open, and how long people typically wait to receive a voucher. You may even want to consider moving to an area with a short waiting list rather than waiting 5+ years for a voucher in a big city. Once you receive a voucher, you must live in that jurisdiction for one year — but after that, you can port your voucher anywhere else in the country. See this guide for more information. Whether you’ll be renting or buying, make a list of everything you require for housing to be accessible to you. This will be different for each person. Do you need to live close to public transportation, or do you prefer a quiet rural or suburban area without bright city lights and noise? Do you need a yard for a service dog, or a condo or apartment with no yard to maintain? Do you need a roll-in shower or an adapted kitchen? If you have a mobility disability and are planning to buy a home, research the common styles of residential architecture in the area to see whether they lend themselves to accessibility. For example, in California, many houses are single-story with just a step or two, and have fairly open floor plans. These houses could be made wheelchair-accessible fairly easily. However, in the Midwest, multi-story homes are popular; these are difficult and costly to remodel for accessibility. Often, styles vary by neighborhood as well, so once you determine which parts of town have the housing type you need, you can narrow your search. 4. How accessible and inclusive are schools and universities in the area? If you have a child with a disability, you want the best educational opportunities for them — which often means inclusion in classrooms with their typical peers. Although IDEA requires that children with disabilities be educated in the least restrictive environment, in practice, many kids are segregated and many parents must fight for their right to inclusion. In some areas, these battles have been won and lasting change has been at least somewhat achieved, while in others, there’s still a long way to go. Before you move, do some research on the school districts and neighborhood schools. The usual measurements for good schools may be less relevant in your situation, so find parents of kids with disabilities who live in the area to get their recommendations. Then narrow down your home search to neighborhoods in those districts. If you or your child may pursue higher education in the future, look into accessibility at local colleges and universities. Is the campus wheelchair accessible? Do they offer online classes? Do they have a robust program to provide support to students with learning and/or physical disabilities? Although some young adults with disabilities do move away for college, it’s nice to have a local option. 5. How will the weather and future effects of climate change affect disability accessibility and my health? If you’re not sure of the best place to move for your disability, or you’re trying to choose between a couple of options, the weather could be a deciding factor. Weather can have a direct impact on our health, reducing or exacerbating symptoms. For example, many people with arthritis and other chronic pain conditions find that they have more mobility and less pain living in a dry, warm climate such as Southern California, Arizona, or New Mexico. Cold tends to increase pain, but barometric pressure changes in warm, humid climates such as the U.S. South can also contribute to chronic illness flare-ups. Weather can also affect the accessibility of our environment. If you live in an area with heavy snowfall, it may be difficult to leave your home in the winter — or for family or caregivers to get to you if you need help. Some cities and towns do a better or worse job shoveling sidewalks; be sure to look into this before moving if you use a wheelchair or other mobility aid and need to get around without a car during the winter. Every place in the U.S. is prone to natural disasters of some kind, so it’s important to know the hazards in a new area before you move. Often, there are ways to minimize or reduce your risk. When looking at a home to buy or rent, check to see if it is in a hurricane, flood, or fire zone. You may want to live near the beach in Florida, but considering the time and cost of finding and/or remodeling a home for accessibility, choosing an apartment or house several miles inland is a safer option. Develop a safety plan in case you need to evacuate or shelter in place due to a natural disaster. If you can’t drive, who will help you leave? Do you have non-perishable food on hand and a backup battery to charge or power your essential medical equipment? If you are unable to prepare or protect yourself in the event of a disaster that is common in an area, you may want to consider a different place to live. And finally, consider the potential impact of climate change. Hurricanes and thunderstorms are becoming more severe as temperatures increase, and scientists predict that sea levels will rise, flooding many coastal areas. This may sound like a far-off nightmare, but it could happen within the lifetimes of many young and middle-aged people with disabilities. Previous disasters such as Hurricane Katrina have demonstrated that people with disabilities and seniors are often forgotten, neglected, and left behind in a crisis. We have to think about the future, because the future won’t think about us. Resources for Moving With a Disability How to Get On — a self-advocacy guide for getting the disability services you need Medicaid Consumer-Directed Home Care Waivers State by State Guide Medicaid Waiver Waiting List State by State Chart Status of State Medicaid Expansion Decisions: Interactive Map How to Port Your Section 8 Voucher Partnership for Inclusive Disaster Strategies — organization advocating for better emergency services for people with disabilities As someone with a disability who has spent the past six years wanting to move and weighing different options, I know that there is no perfect place to live, no fully-accessible and affordable disability paradise. But if we set priorities and work steadily towards our goals, we can improve the quality of our lives by moving to a place that better meets our needs.

People Share the Best Conversations They've Had About Their Health

“Share the best conversation you’ve had about your health.” I’ll be honest, I couldn’t think of many good conversations about my health at first. Those of us who live with a chronic condition or disability are often subjected to ignorant and rude comments. Doctors can be dismissive, and government agencies that are supposed to help us often make us jump through hoops to prove that we really are sick/disabled. Even well-intentioned people may offer unsolicited health advice like “Have you tried yoga?” that frequently isn’t helpful. Amidst all this negativity, it can be difficult to remember the positive experiences — but that’s why it’s especially important for us to hold onto the good conversations and the people who support us no matter what. I have both a physical disability and invisible conditions, but lately, I’ve been speaking up more about my invisible disabilities and neurodivergence. This has led to some amazing conversations with people who have similar experiences, but like me, they haven’t discussed them much publicly. Often when we talk about health, we fear being judged, but this experience has reminded me that when we share our truth, we can and often do receive tremendous support. Here’s what our contributors told us about their own experiences: 1. Ameera Ladak, on ADHD “The best conversation I’ve had about my ADHD was with a friend who is also neurodivergent. Though our conditions are different, I appreciated how attentively she listened and how much of an interest she took in learning about me. We shared our challenges, shared our differences from neurotypical people, and asked questions back and forth. Over time, we’ve continued these deep and sacred chats, often texting each other after therapy, reflecting on our experiences, and having rich conversations. It’s the best because I not only feel seen, but I feel like she wants to see me and makes active efforts to do so.” If you’re experiencing something similar, read this: 10 Things Neurotypical People Need to Know About Living With ADHD An Inclusive View of What It Actually Means to Be Neurodiverse 2. Megan Glosson, on Chronic Migraine   “I woke up to that familiar, unwelcome guest — migraine. As I tried to get out of bed to grab supplies, my partner rolled over and gently stroked my hair. ‘Migraine?’ she said. I nodded. Without another word, she climbed out of bed and quickly returned with my ice pack, a bottle of water, and some pills. ‘I’m sorry I’m so broken,’ I mumbled as I drank a sip of water. ‘I’m broken, too. I love you,’ she replied. There wasn’t any complaining or judgment, just unconditional love and understanding. I’m constantly thankful I found a partner who also lives with health conditions.” If you’re experiencing something similar, read this: Supporting Those Who Support Us in Life With Chronic Illness 6 Ways Your Partner Can Help During Migraine Attacks 3. Ashley Nestler, on Schizoaffective Disorder   “The best conversation I have had about my health took place in a therapy session.  I had come to the conclusion that I would need to apply for disability due to my multiple mental illnesses and inability to work. My therapist responded by saying, ‘This does not define you. This is just a part of your life and something that you need to do for yourself now. It does not mean that this is forever, but you need to use the resources available to you to help you now.’ Never had I felt more seen or understood than my therapist validating me and my struggles in that single moment.” If you’re experiencing something similar, read this: 16 Secrets of People Who Aren’t Working Because of Their Mental Illness Slipping Through the Cracks as Someone Disabled by Mental Illness 4. Monika Sudakov, on Endometriosis   “One doesn’t generally expect a conversation with an employer to be the magic key that unlocks their mysterious illness, but that’s what happened to me. I had called in sick every month because of my excruciating periods. When my boss confronted me about it, I told him about my symptoms. Instead of disciplining me, he shared that his wife had the same issues and a laparoscopic procedure led to a diagnosis of endometriosis. His willingness to listen to me and provide me with a referral was the reason I finally got the treatment I needed. I’ll forever be grateful to him.” If you’re experiencing something similar, read this: Just Diagnosed With Endometriosis? Here’s a 5-Step Plan to Help 7 Tips for Talking to Your Doctor About Endometriosis   What is the best conversation you’ve ever had regarding your health? We want to hear about it. Let us know in the comments below, and share your own by submitting a story or posting a Thought.

Not Quite Autistic: What's in My Neurodiversity Grab Bag

“There’s no such thing as being a little bit autistic.” I’ve heard this phrase many times. It’s a common refrain in the autistic community, and for good reason. Whether they’re stereotyped as Rain Man or subjected to damaging “therapy” like ABA that punishes them for flapping their hands, autistic people experience so much judgment just for being who they are. And in a society where neurotypical people toss out diagnoses flippantly, saying things like “I’m so OCD” because they like to keep their home organized, it’s understandable that autistic people fiercely defend the boundaries of their condition. But what if you are a little bit autistic? What if you have some characteristics of autism, but not the whole enchilada? What happens when you have a mixed bag of traits — not quite autism, but definitely sensory processing disorder (which you had never heard of until you were almost 40), perceptual and learning disabilities that weren’t identified in childhood testing but affect you every day, anxiety through the roof, PTSD but it’s mild, and some traits of ADHD… oh look, a squirrel! Howdy folks, welcome to my brain. This is what’s in my neurodiversity grab bag. I have cerebral palsy, a disability caused by brain damage at birth. I use a power wheelchair and have limited use of my arms, but as a child, an IQ test put me in the highly gifted range. My mother was a special education teacher before I was born, and she always told me that I didn’t have any learning disabilities. To this day, I don’t know why she said that over and over; maybe she just wanted me to believe it. I could read by the time I was 3, and I’d always get a gasp out of my doctors and therapists when I’d use long medical terms related to my disabilities. Spasticity. Clonus. Asymmetrical tonic neck reflex (imagine a toddler spitting THAT one out). Tactile defensiveness. That one was by far the worst, because it didn’t fit with the others. It had judgment attached to it. It was supposedly about my body, but it felt like it was about my mind. Children and adults who are tactile defensive find a variety of everyday touch sensations to be repellent and/or painful. I was a very picky eater and only liked pasta with butter and other “plain” foods, most of which are very flavorful to me. Going barefoot in the grass felt like being stabbed with needles. I couldn’t stand to touch anything sticky or gooey. To desensitize me, my mother would spray shaving cream on a plastic plate and stick my hands into it. That made me cry, but it wasn’t as bad as having to hold onto a wooden cylinder or a metal can full of dried beans while she pounded on the top. The noise and the sensation made me scream. I actually blocked that from my memory; it came back as I was writing this. Fireworks can leave my nerves frazzled for hours. Never sneak up behind me and scare me for fun; it makes me jump out of my skin. I love Halloween, but I have to mute scary movies just before the jump scares happen, and most haunted houses are too much for me. Like many people with cerebral palsy, I have an exaggerated startle reflex, but no one explained it to me; I had to find out about it as an adult from people on a CP Facebook group. I had both sensory meltdowns and panic attacks as a child. I didn’t know those terms, just that I had “tantrums” I should have outgrown years before. My parents would get angry that I couldn’t control my emotions, but I had to scream and scream until I collapsed, or have someone comfort me, which the parenting wisdom of the time said would be spoiling a child and encouraging the behavior. I needed help learning to regulate my emotions, but never got it, because no one understood or listened when I tried to explain what my “tantrums” felt like. In their minds, I was a smart kid who should know better and needed to grow up. In school, I excelled in every subject except math, where I struggled, but everyone tried to keep pushing me into advanced math studies. I was “gifted,” after all. And as I started to learn life skills as a teen, I began running into perceptual problems my peers didn’t experience. I struggled to read maps, to figure out which direction I was going. I get lost indoors too, where GPS can’t save me. Schools, office buildings, and hotels are a nightmare for me to navigate. I’ve been embarrassed to the point of tears after turning the wrong direction for the exit when leaving a hotel room I’ve been staying in for several days. People don’t understand how I can have a Master’s degree but be unable to find an exit or have to go to the grocery store 10 times before I can remember where it is. I sense their confusion and their judgment, and I feel humiliated. One of our Mighty contributors, Michelle Steiner, described this experience perfectly: I am “caught in the act” of being neurodivergent. My neurodivergence shows in other ways, too. I have strong special interests, a characteristic of both autism and ADHD, and the way they manifest seems to be a combination of both as well. My most enduring special interest is musical theatre; I was a huge “Phantom of the Opera” fan for years, though other shows have surpassed it for me now. I also have what I call “rabbit holes” — interests I’ll dive into intensely for a few days or weeks at a time and return to periodically. As a child, I tended to be obsessed with one or two interests and didn’t want to talk about anything else, but now, I can shift between topics and mostly avoid irritating or boring people. In my experience, neurodivergent people with similar interests and communication styles tend to naturally gravitate toward each other. I met many of my friends through a shared special interest, or we have different special interests we enjoy discussing with each other. We can “infodump” a bunch of thoughts about our interest(s) and the other person will naturally realize what we’re doing instead of getting annoyed. Once we’ve finished, the other person can ask questions, make comments, or share their own infodump, possibly on a totally different topic, and that’s OK. I love learning about other people’s special interests and exploring new ideas in detail. For years, I didn’t notice this pattern or realize that it was unusual. But after several of my friends received or revealed their diagnoses as adults, it made me wonder about myself. If I am hanging out mostly with neurodivergent people, what does that say about me? The thing is, every time I take one of those online autism tests, it tells me I’m not autistic. And the reason why is clear to me when I answer the questions: social skills. My answers on the two halves of what defines autism are starkly disparate. When it comes to sensory processing, I clearly meet the criteria, but I don’t have major difficulties with social situations. I’m an introvert and I think small talk is silly, but I can mostly handle everyday social interactions. I need a certain amount of routine and can be majorly thrown off course if things change unexpectedly, but I don’t think in black and white — quite the opposite, in fact. Like many neurodivergent people, I often “mask” (hide) how I’m feeling in certain situations, but my sensory processing disorder has improved somewhat since childhood. I can now eat a fairly wide variety of foods, though I’m repulsed by textures like cooked spinach and still love my “bland” favorites. Although I have more panic attacks, I rarely have meltdowns, unless I’m in extreme physical pain or massive sensory overload with no way to escape. This all leads me to conclude that I’m not quite autistic — but I am also most certainly not neurotypical. Where do people like me fit — the almost, the not-quite, the in-between? We break the rules and mess up the neat categories. There’s already a lot of community infighting about who is “autistic enough” — though it’s mostly neurotypical parents hosting an Oppression Olympics because they think their kids with high support needs are the only ones with “real” autism. That’s clearly not true, but also, however much some might want it to be so, there is no bright line between autistic and not autistic, because human minds don’t work that way. Autism, sensory processing disorder, ADHD, and other developmental and mental “disorders” are concepts invented by neurotypicals to describe people who don’t fit into narrow little boxes. Some people fit neatly into the categories they created, but others don’t. And that’s OK. We don’t need to compare or one-up each other because all of our experiences and struggles are valid. With that said, as an in-between neurodivergent, I don’t want to step on the toes of people with a clear diagnosis who already have neurotypicals questioning them from all sides. I want to stay in my lane, but I don’t really have a lane to stay in. I do know that I can’t and won’t speak for someone with an autism diagnosis (or who knows they’re autistic but can’t get diagnosed because our health care system is broken), but I can be an ally. I can also speak up when I encounter sensory and communication inaccessibility, because I usually notice it, even if I can cope with it to some extent. As a community and social movement, neurodivergent people have reclaimed the diagnoses originally designed to pathologize them and instead made them a core part of their identity. Most autistic people prefer to be called autistic, not a person with autism, because autism shapes how their mind works and how they perceive the world. Many people with ADHD embrace the creativity and hyperfocus that tend to be part of their neurology. The neurodivergent people I know are unique, brilliant, and in no way broken. The world is a better place because they’re in it. But I’m still working on extending that acceptance to myself. I have struggled with how my neurodivergence conflicts with the “smart” image people have of me. I have started being upfront with people to stop judgments before they start. “I get lost in buildings sometimes, please be patient and don’t laugh at me.” “Thank you for inviting me to see fireworks, but my body and mind don’t cope well with sudden loud noises.” I also recognize that my emotional sensitivity, creativity, and strong connection to others who are different stem from my neurodivergence, and those are all positive qualities. None of us get to choose what’s in our neurodiversity grab bag or whether it neatly fits into a diagnosis that currently exists. But whether we are neurotypical or neurodivergent, we can choose to be our unique selves, accept others, and do our part to make the world a more accepting place for all kinds of minds.

Community Voices

What do you wear to make your feet more comfortable

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Kathy Hooven

Accepting Your Autistic Child's Dreams as a Parent

“Practice what you preach” is how the old adage goes — but I’m here to tell you that sometimes I’m a much better “preacher” than I am a “practicer.” I read an article today that I should have read yesterday before I really pissed my kid off. The article was titled “Are Your Dreams for Your Autistic Child Serving You or Them?” I often preach on my Facebook page, on my blog, and to anyone who will listen about this very topic, trying to remind all of us — myself included — to make sure you aren’t putting your wants, your needs, and your dreams on your kid. Yeah, of course we probably all want our kids to be happy, but how “happy” looks to you may not be how “happy” looks to your child, and that, my friends, is where we get lost. We may get tangled up in the weeds of what our neurotypical minds believe our autistic kids’ dreams should look like, but our vision may not only look different, it likely also is different. After all, our children are autistic, and we are not. Look, I’ve been at this parenting thing for almost 24 years and this “parenting an autistic child” thing for over 20 years and yeah, I have dreams for all three of my kids, but expecting their dreams to look like the happy ending I’ve created in my mind is not only wrong, it’s a disservice to them. I may subconsciously — OK, fine, sometimes consciously — be pushing a happy ending to my idea of their story, not theirs. Many of the dreams we have for our kids may follow a “typical” timeline: go to school, graduate from school, go to college or trade school, find meaningful employment, find a partner, settle down, have a family, and be happy. It may be most parents’ dreams for their kids. Not all kids want our dreams or to follow our timelines, though. My “preaching” lacked “practice” yesterday while chatting with my 20-year-old autistic son in the car. Last January, at the age of 19, three years past the legal driving age in our state, Ryan finally decided to get his driver’s permit. “His time, his way,” I wrote at the time. Ryan has practiced driving three times since then and did great, but once he found out about the mandatory 65 hours of driving required to take his actual driver’s test, he lost all interest. I tried to explain that even if he’s good at driving, he has to practice and become experienced and safe as it’s a big — life-or-death kind of big — responsibility getting behind the wheel of a car. He didn’t want to hear any of it, so I stopped “preaching.” Then yesterday, knowing his permit expires in a week, I suggested he start looking over the driver’s application and take the test again. After I suggested it three times, he covered his ears. When I brought it up the fourth time, he yelled, “I don’t care if I ever drive, so why do you?” Of course, I gave him loads of reasons why I think it’s important, why I wanted a license, and why I needed a license. It was my dream and my reasons, not his. And you know what he said to me? “You will never understand.” He’s right — I will never understand because I’m not autistic, but mostly because I’m not him. However, just because I don’t understand doesn’t mean I can’t respect the choices my son makes for his life when it comes to his dreams. So yeah, here I am acting as your “preacher” again, but after that moment yesterday, I’m going to try really hard to remember that words are just words when you don’t practice what you preach. From here on out, I’m going to “preach less” and “practice more” — for your sake and for my sake, but mostly for my son’s sake.

Not Quite Autistic: What's in My Neurodiversity Grab Bag

“There’s no such thing as being a little bit autistic.” I’ve heard this phrase many times. It’s a common refrain in the autistic community, and for good reason. Whether they’re stereotyped as Rain Man or subjected to damaging “therapy” like ABA that punishes them for flapping their hands, autistic people experience so much judgment just for being who they are. And in a society where neurotypical people toss out diagnoses flippantly, saying things like “I’m so OCD” because they like to keep their home organized, it’s understandable that autistic people fiercely defend the boundaries of their condition. But what if you are a little bit autistic? What if you have some characteristics of autism, but not the whole enchilada? What happens when you have a mixed bag of traits — not quite autism, but definitely sensory processing disorder (which you had never heard of until you were almost 40), perceptual and learning disabilities that weren’t identified in childhood testing but affect you every day, anxiety through the roof, PTSD but it’s mild, and some traits of ADHD… oh look, a squirrel! Howdy folks, welcome to my brain. This is what’s in my neurodiversity grab bag. I have cerebral palsy, a disability caused by brain damage at birth. I use a power wheelchair and have limited use of my arms, but as a child, an IQ test put me in the highly gifted range. My mother was a special education teacher before I was born, and she always told me that I didn’t have any learning disabilities. To this day, I don’t know why she said that over and over; maybe she just wanted me to believe it. I could read by the time I was 3, and I’d always get a gasp out of my doctors and therapists when I’d use long medical terms related to my disabilities. Spasticity. Clonus. Asymmetrical tonic neck reflex (imagine a toddler spitting THAT one out). Tactile defensiveness. That one was by far the worst, because it didn’t fit with the others. It had judgment attached to it. It was supposedly about my body, but it felt like it was about my mind. Children and adults who are tactile defensive find a variety of everyday touch sensations to be repellent and/or painful. I was a very picky eater and only liked pasta with butter and other “plain” foods, most of which are very flavorful to me. Going barefoot in the grass felt like being stabbed with needles. I couldn’t stand to touch anything sticky or gooey. To desensitize me, my mother would spray shaving cream on a plastic plate and stick my hands into it. That made me cry, but it wasn’t as bad as having to hold onto a wooden cylinder or a metal can full of dried beans while she pounded on the top. The noise and the sensation made me scream. I actually blocked that from my memory; it came back as I was writing this. Fireworks can leave my nerves frazzled for hours. Never sneak up behind me and scare me for fun; it makes me jump out of my skin. I love Halloween, but I have to mute scary movies just before the jump scares happen, and most haunted houses are too much for me. Like many people with cerebral palsy, I have an exaggerated startle reflex, but no one explained it to me; I had to find out about it as an adult from people on a CP Facebook group. I had both sensory meltdowns and panic attacks as a child. I didn’t know those terms, just that I had “tantrums” I should have outgrown years before. My parents would get angry that I couldn’t control my emotions, but I had to scream and scream until I collapsed, or have someone comfort me, which the parenting wisdom of the time said would be spoiling a child and encouraging the behavior. I needed help learning to regulate my emotions, but never got it, because no one understood or listened when I tried to explain what my “tantrums” felt like. In their minds, I was a smart kid who should know better and needed to grow up. In school, I excelled in every subject except math, where I struggled, but everyone tried to keep pushing me into advanced math studies. I was “gifted,” after all. And as I started to learn life skills as a teen, I began running into perceptual problems my peers didn’t experience. I struggled to read maps, to figure out which direction I was going. I get lost indoors too, where GPS can’t save me. Schools, office buildings, and hotels are a nightmare for me to navigate. I’ve been embarrassed to the point of tears after turning the wrong direction for the exit when leaving a hotel room I’ve been staying in for several days. People don’t understand how I can have a Master’s degree but be unable to find an exit or have to go to the grocery store 10 times before I can remember where it is. I sense their confusion and their judgment, and I feel humiliated. One of our Mighty contributors, Michelle Steiner, described this experience perfectly: I am “caught in the act” of being neurodivergent. My neurodivergence shows in other ways, too. I have strong special interests, a characteristic of both autism and ADHD, and the way they manifest seems to be a combination of both as well. My most enduring special interest is musical theatre; I was a huge “Phantom of the Opera” fan for years, though other shows have surpassed it for me now. I also have what I call “rabbit holes” — interests I’ll dive into intensely for a few days or weeks at a time and return to periodically. As a child, I tended to be obsessed with one or two interests and didn’t want to talk about anything else, but now, I can shift between topics and mostly avoid irritating or boring people. In my experience, neurodivergent people with similar interests and communication styles tend to naturally gravitate toward each other. I met many of my friends through a shared special interest, or we have different special interests we enjoy discussing with each other. We can “infodump” a bunch of thoughts about our interest(s) and the other person will naturally realize what we’re doing instead of getting annoyed. Once we’ve finished, the other person can ask questions, make comments, or share their own infodump, possibly on a totally different topic, and that’s OK. I love learning about other people’s special interests and exploring new ideas in detail. For years, I didn’t notice this pattern or realize that it was unusual. But after several of my friends received or revealed their diagnoses as adults, it made me wonder about myself. If I am hanging out mostly with neurodivergent people, what does that say about me? The thing is, every time I take one of those online autism tests, it tells me I’m not autistic. And the reason why is clear to me when I answer the questions: social skills. My answers on the two halves of what defines autism are starkly disparate. When it comes to sensory processing, I clearly meet the criteria, but I don’t have major difficulties with social situations. I’m an introvert and I think small talk is silly, but I can mostly handle everyday social interactions. I need a certain amount of routine and can be majorly thrown off course if things change unexpectedly, but I don’t think in black and white — quite the opposite, in fact. Like many neurodivergent people, I often “mask” (hide) how I’m feeling in certain situations, but my sensory processing disorder has improved somewhat since childhood. I can now eat a fairly wide variety of foods, though I’m repulsed by textures like cooked spinach and still love my “bland” favorites. Although I have more panic attacks, I rarely have meltdowns, unless I’m in extreme physical pain or massive sensory overload with no way to escape. This all leads me to conclude that I’m not quite autistic — but I am also most certainly not neurotypical. Where do people like me fit — the almost, the not-quite, the in-between? We break the rules and mess up the neat categories. There’s already a lot of community infighting about who is “autistic enough” — though it’s mostly neurotypical parents hosting an Oppression Olympics because they think their kids with high support needs are the only ones with “real” autism. That’s clearly not true, but also, however much some might want it to be so, there is no bright line between autistic and not autistic, because human minds don’t work that way. Autism, sensory processing disorder, ADHD, and other developmental and mental “disorders” are concepts invented by neurotypicals to describe people who don’t fit into narrow little boxes. Some people fit neatly into the categories they created, but others don’t. And that’s OK. We don’t need to compare or one-up each other because all of our experiences and struggles are valid. With that said, as an in-between neurodivergent, I don’t want to step on the toes of people with a clear diagnosis who already have neurotypicals questioning them from all sides. I want to stay in my lane, but I don’t really have a lane to stay in. I do know that I can’t and won’t speak for someone with an autism diagnosis (or who knows they’re autistic but can’t get diagnosed because our health care system is broken), but I can be an ally. I can also speak up when I encounter sensory and communication inaccessibility, because I usually notice it, even if I can cope with it to some extent. As a community and social movement, neurodivergent people have reclaimed the diagnoses originally designed to pathologize them and instead made them a core part of their identity. Most autistic people prefer to be called autistic, not a person with autism, because autism shapes how their mind works and how they perceive the world. Many people with ADHD embrace the creativity and hyperfocus that tend to be part of their neurology. The neurodivergent people I know are unique, brilliant, and in no way broken. The world is a better place because they’re in it. But I’m still working on extending that acceptance to myself. I have struggled with how my neurodivergence conflicts with the “smart” image people have of me. I have started being upfront with people to stop judgments before they start. “I get lost in buildings sometimes, please be patient and don’t laugh at me.” “Thank you for inviting me to see fireworks, but my body and mind don’t cope well with sudden loud noises.” I also recognize that my emotional sensitivity, creativity, and strong connection to others who are different stem from my neurodivergence, and those are all positive qualities. None of us get to choose what’s in our neurodiversity grab bag or whether it neatly fits into a diagnosis that currently exists. But whether we are neurotypical or neurodivergent, we can choose to be our unique selves, accept others, and do our part to make the world a more accepting place for all kinds of minds.