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7 Disabled Intersex People Explain How They Embrace Their Identities

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Each year on October 26, we celebrate Intersex Awareness Day. It is estimated that intersex people make up about 1.7% of the global population (about the same as natural redheads).

Being intersex means that a person is born with variations in their sex traits and/or reproductive organs, such as their genitalia, chromosomes, hormones, or visible characteristics like body hair and chest tissue. These variations do not match enforced ideas of the gender binary.

Because intersex folks have bodies beyond what Western medicine considers "normal," we're often pathologized for our intersex traits. Being intersex isn't inherently a disability, but as with anyone, some of us are also disabled. Some of those disabilities are independent of being intersex. And, some intersex people do consider themselves disabled due to how their intersex variation manifests. For example, Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH) can affect how organs including the kidneys, heart, and spine develop, which some individuals with MRKH view as disabling.

This year, the theme of Intersex Awareness Day is "Intersex Futures." How can we truly work toward inclusive, joy-filled futures for all intersex people? In that spirit, I asked seven intersex and disabled activists what they wish more people knew.

Editor's Note: Responses have been edited for length and clarity. All subjects and the author of this story are in some way affiliated with interACT.

Keshet Spitzer

Being both intersex and disabled feel innately connected for me. As a child, I stood out. I didn't think the way other kids did, I didn't look the way other kids did, and I couldn't do the things other kids did. I felt alienated and confused by what made me different from everyone else.

After I started puberty, people began fixating on my appearance, calling me names for my facial and body hair. I was encouraged by the adults in my life to remove it, even though the removal was very painful for me. If instead they had asked me what I wanted for my body, or even told the other children not to make comments about my appearance, that would've meant a lot to me. By listening to me, adults could have helped other kids understand their own bodies and internal states, too.

Because my intersex variation was pathologized while I was growing up, I saw it as a "health issue." I sought guidance and support for it in disability communities and was encouraged to explore the possibility that I was intersex. Eventually I found InterACT and they were beyond helpful! Once I started participating in the intersex community, I got a lot better at accepting my natural sex characteristics because I learned that there wasn't anything broken about me to begin with. It should've been my choice to keep or change them as I wanted.

My advice to young intersex and disabled people is to look for spaces that aren't going to medicalize you, that show compassion for your feelings and needs, and that respect your intersectional experiences! They're out there, and finding an accepting environment is life-changing!

Maddie Moran

I am disabled independent of my variation, and although I don't see my particular variation as disabling, I see the procedures done to "fix" me and change my intersex traits as disabling.

I had surgery when I turned 18, and that surgery was a cosmetic one that I didn't realize was entirely cosmetic. Because I have Ehlers-Danlos Syndrome, my healing was especially poor and I came out with some kind of damage to my stomach. I now live with gastroparesis. I have a lot of intolerances, as well as several other chronic pain conditions that [have] emerged. It does impact my ability to work, to take care of myself on a regular basis, and to feed myself. If I knew at the time that I was intersex and had a community, I don't know if I would have felt [socially] pressured to change my body in the same way.

What It Means to Be Intersex

Not all bodies are binary.

Although I was offered a cosmetic surgery that I did not need, I was not [initially] offered an actually quite common surgery that I did need for my pain. People with MRKH often have pain in their uterine remnants. I had been expressing this when I was a teenager, but it was only within the last two years that I was able to have the surgery I needed to get those removed. Doctors often spend time trying to "treat" intersex traits in order to fit their expectations of what should be done rather than treating intersex individuals' actual medical needs.

I want medical providers to know that many of us carry a lot of trauma, and what that looks like in medical spaces is often a distrust of providers. I think that's true for both intersex and for disabled folks, and especially for folks at the intersection of both. Doctors often don't believe our knowledge of our own bodies. I need providers to make the time to sit with me, to hear my concerns, and to let me take things at a snail's pace if that's what I need to do. The only person that I fully trust as a provider of care is myself.

Rainii Fletcher

My experiences being intersex and disabled are inseparable. I am disabled directly from being intersex, and then I have intersex traits that are not disabling but are still very pathologized.

Mostly, I always had this knowledge that I wasn't developing "right" across every aspect of who I was. As I grew up, nobody seemed surprised when my puberty didn't seem to be going typically. They assumed that it was an extension of me being disabled in some way. A lot of my sex characteristics are defined as underdeveloped or infantile. What does that really mean? The way it's phrased would make you think that you're stuck in time.

I went through Applied Behavioral Analysis (ABA) therapy as a child, which was very traumatic for me. A lot of what I learned growing up about my autism and about my disability was that you don't talk to other people about it. It's the same feeling of being both visibly intersex and visibly disabled. You constantly feel exposed, but at the same time pressured to hide who you are, and other people are constantly trying to "fix" you.

I think it's very easy to say that I wish people in my life had been more supportive. That is true, but it's hard to be supportive when there's not awareness out there of what all of this means or what to do with it. Even the people who messed up and traumatized me weren't given many good options themselves. When I was put into ABA, that's the only service that insurance would cover. The other option was sending me to a permanent home for disabled people. It all comes back to awareness, which then can lead to support.

Now, I want to reclaim being intersex and disabled as something that I am proud of and even happy to be. For the past several years, I've been making advocacy art. It's a way of making our experiences, which so many people are still misinformed or don't know about, something that people have to look at. It's also for myself. It's an announcement that we're here, and we're not going to shut up about it. The first time I made public art felt like crossing a boundary. We're not "supposed" to be doing this, and that's why I want to do it.

Desmond Luis Edwards

Between my junior and senior years of high school, I attended a Broadway intensive summer camp. Jacob Yandura, the composer of How to Dance in Ohio, was the arranger for the music that we were doing. We knew that he was working on something, but we didn't know what it was.

All summer, I felt like a really annoying, overenthusiastic kid sitting in the front of the classroom, constantly going, "Oh, I know the answer!" I confided in Jacob and his partner, Paul, who ran the summer camp. I said, "I'm sorry for acting the way that I do. I'm autistic."

They were like, "Why are you apologizing?" I had a moment where I realized, Wait, they're right. Why am I apologizing? That was probably the last time that I ever apologized for being autistic, which is a celebration within itself.

The last day of our summer camp, Jacob came up to me. He said, "I think you'd be great for a role in the musical that I'm working on. It's about autistic people, and we want to cast actual autistic actors to play these autistic roles." I sent them a self-tape, and I got cast at 17 years old. The first workshop that we had was during my senior year of high school.

I identified as a trans man at the time. I didn't know that I was intersex. I realized that I was intersex in February of 2023, during one of our final workshops before Broadway. There are barely any openly intersex people in the Broadway community. When I came out as intersex, I realized that I might be the first openly intersex actor on a Broadway stage. I bet there are more intersex people, but they're not openly intersex. On stage, our costume designer Sarafina Bush helped me include an intersex pride bracelet. That was a really touching moment for me. I wore that bracelet with pride. My version of Remy in How to Dance in Ohio is intersex. I will die by that.

I was raised as a girl. I wore pretty dresses and barrettes in my hair. When I was in second grade I started growing facial hair and breasts at the same time. My entire body, including my legs, underarms, and torso was covered in hair. I remember discovering that I had an Adam's apple around the same time I had my first [period](https://www.Teenvogue.Com/story/intersex-periods-dating) when I was eight. I knew I was different, I just didn't know how to make sense of the differences. I was told by mom and my doctors that I was a normal girl, especially since I already had my period. However, my enlarged clitoris made me feel different. I couldn't wear swimsuits because I always had a noticeable bulge that the other girls made fun of. No one was preparing me for those types of experiences. I felt very alone and confused. I started loosely identifying as intersex when I was in middle school. I finally had a word to describe my experience. I had something to say to people when they asked me if I was a boy or a girl. Now I get to embrace my intersex characteristics on public platforms and raise awareness about intersex issues. I'll take that over being a "normal girl" any day.

Courtesy of Bria

From the day I was born, it was clear my body was intersex. I lived in India until my parents, who are from the United States, adopted me at age 2. Doctors in India performed [surgeries without my consent](https://www.Teenvogue.Com/story/intersex-genital-mutilation) to make my genitalia look "typically female." That meant a clitoroplasty, vaginoplasty, followed by a series of dilations. Because of the surgeries I suffer from soreness, stinging pain, and a PTSD-like response in medical settings. I first heard the term intersex during first or second grade when my parents took me to a check-up. Before I heard the word intersex, I used the term "DSD," a medical phrase meaning "disorder of sex development." I still feel that doctors use language which makes me feel like a specimen. Today I feel my body is out of my control. I have a uterine structure that gives me a period. Doctors never told me this about my body, until I was surprised by bleeding. I wish I was fully informed.

Courtesy of Banti

I am a Black, indigenous, plus-size intersex trans femme — and yes, you can reside at the intersection of all of these identities. It is so important to acknowledge and dispel the myths of what an intersex person is supposed to look like. We often see thin, white/white-coded people in the media, especially around the movement, but that is simply not true. I knew I had surgeries as a young child. I learned the truth about what happened much later on. I didn't hear the word intersex until I met other people online through [interACT's](https://interactadvocates.Org/) advocacy group. We are here. Our bodies are not wrong. Our bodies break the binary. Our bodies are whole. Our stories may seem to always live in the world of sadness, but we are thriving and fighting in a society that constantly erases us. I have to remember to tell myself that my body is powerful, and it is full of the [groundbreaking fight for liberation](https://www.Glaad.Org/amp/how-to-honor-intersex-awareness-day-and-fight-back-against-trump). I am proud to be intersex and live my truth authentically and fully.

Courtesy of Johnny

I was born with proximal hypospadias and underwent an unsuccessful cosmetic procedure as an infant, leaving me with complications. The feelings of shame shrouded my teen years and I developed chronic depression. Desperately wanting to be "normal," I went under the knife again at 17, however this left me with even more physical issues. Google searches late at night lead me to discover the term "intersex" years later while in college, and for the first time in my life I was able to find other people that had gone through similar experiences and attach a non-stigmatizing label to my body. Being part of the intersex community taught me to love myself, helping undo years of internalized shame and healing from the harmful messaging that my body is broken and must be fixed. It was only until recently that I've been able to gain the confidence to share my story and advocate the rights of intersex people.

Courtesy of Cat

Being secretly intersex, even when I only knew medicalized terminology, felt very isolating. I never got to learn about bodies like mine being healthy, so I would wish for a different kind of "illness" that wasn't so [invisible](https://www.Teenvogue.Com/story/7-people-with-less-visible-disabilities-talk-misconceptions-and-stigma). My private parts looked visibly different, and I desperately tried to conceal this. I was mortified at the thought of someone finding out. I never admitted when I fancied someone, and I would always try to change into my gym clothes out of sight. I was taught to hate my body from a young age. I was made to feel like I was a freak. Yet, I think what made my experience so unusual was that I looked perfectly fine to most people throughout my life. I was still in primary school when I began to understand that there was something about me that doctors found intriguing, but I couldn't figure out why. All my scars were hidden. I never spoke about any of the medical stuff, because that would be admitting something was different. The truth was something I spent a long time hiding and I just wish I didn't have so much fear. What hurt the most, aside from the surgeries and infections, was the idea that I would always be rejected and never comfortable in my own skin. Turns out, the more we [share our experiences](https://www.Youtube.Com/watch?V=EVFAtNvSguE), the easier it is for other people to consider our stories and be kinder. So, next time you're thinking about making jokes about someone's body or size: don't.

Anick

I was about 12 when everyone my age hit puberty, but I didn't: No breasts, no [period](teenvogue.Com/story/intersex-periods-dating), only some signs of high testosterone levels. At 15, I had my gonads removed without clearly understanding what was being done to me. I was given estrogen, and two years later I started my period but I never got much breast growth. I learned that I'm intersex at 22 when I saw the ["What It's Like To Be Intersex"](https://www.Youtube.Com/watch?V=cAUDKEI4QKI) video on *Buzzfeed*, which led me to seek out my medical records. I found that that I have XY chromosomes and an intersex variation called mixed gonadal dysgenesis. Discovering the truth was the best thing that ever happened to me. I wish I knew the truth from the start. I could've avoided years of pain, shame, and self-hatred. My life could've been completely different. But my painful experience gives me energy to work towards a future where no intersex child would have to go through what I had to experience.

Courtesy of Irene

My intersex story started once I hit puberty. I had no idea that I was different until I started to develop characteristics more closely aligned with people assigned male at birth, rather than those assigned female at birth like myself. I never had my period when I was growing up. I didn't develop breasts, despite the fact that both of my sisters developed DD cups. But I did develop in other ways. My skin got oily. I had as much acne as my dad when he was in high school. My body and facial hair was even thicker and darker than my brother's. I was never bothered by these changes myself, but my doctors were confused by my body and uncomfortable that I wasn't developing in the ways that they expected a "normal girl" to develop. They started to push treatment on me that I didn't want: hormone blocking medication to suppress my natural testosterone levels. Some kids do grow up to be cisgender women, and may want to block testosterone to prevent changes such as thicker body hair. I realized I wasn't one of them, but I wasn't really given any say. I was self-conscious that I felt comfortable with my body when I was constantly told that I should medically change it. For the longest time, I was ashamed about being different. I didn't know that a community of people like me existed, and that so many of us do exist happily without medical intervention. [Once I learned the term intersex](https://www.Gaytimes.Co.Uk/culture/126276/i-officially-discovered-that-im-intersex-when-i-was-twenty-one-years-old/) and started to find an identity and community within it, I stopped feeling bad for myself. I embraced my body as beautiful and as a measure of how diverse humans are. I started to feel more confident. Not all intersex experiences involve surgery. To anyone who thinks their bodily experiences might fall under the intersex umbrella, my advice is to explore intersex community and identity. You only have awareness and understanding to gain.

Courtesy of Mari

My intersex body has XY chromosomes, internal testes that were removed when I was 14, and no other internal reproductive organs. I was assigned and raised female, which luckily has always been my [gender identity](https://www.Teenvogue.Com/tag/gender-identity). You can imagine my shock and confusion when my pubescent body started developing some unexpected characteristics, most of which aren't traditionally considered feminine. My voice dropped, leading to bullying at school, I never grew any armpit hair (score), and I started noticing other changes down there. I also don't get a period. I hid all of these differences from those closest to me — denial, shame, and stigma clouded my judgement. Looking back, I was scared to give up the label of being "normal," scared that people would look at me differently. I knew that once I told anyone, there would be no going back. When I finally grew the balls (intersex pun) to come out to my mum, I had been suffering alone for four years. Right before I told her, I asked her not to laugh at me, and I think that says it all: I thought my body was laughable. At that point, I had never even heard the word intersex, let alone seen any media representation or met a fellow intersex person. I thought finding out I was different would be the end of the world, but it turns out it was only the beginning! I have met so many incredible people on my journey to self-love and acceptance. [Embracing my intersex identity](https://i-d.Vice.Com/de/article/d3nwgq/intergeschlechtlichkeit-erfahrung-gender-danielle-coyle-intersexuell) gave me a truly worthy purpose that consistently grounds me and sets me in the right direction. Although the past 10 years have been challenging, I can honestly say I'm so happy I was born the way I am — as me. All the best things in life take work, but as a result I am more empathetic, inclusive and resilient. Happy Intersex Awareness Day 2019!

Growing up, I always had the sense that my body was different. I was assigned female at birth, but I now know that I am intersex. I never wanted to take off my clothes in front of friends and always wore swim trunks and a bikini top. I remember that at age 6 I asked my dad why my genitals were different. He had no answer because he was not yet educated on intersex issues. At 11 I asked my mom why I had no opening when I tried using a tampon. Like my dad, she had no answers. I was embarrassed when she told her friends and sisters about me asking. In adolescence I was taken to a specialist. He wanted to examine my body and discovered I had late pubertal progression. I found out I had a mixed karyotype of XX and XY, and in my late teens I learned I had to get a gonadectomy. I was really upset about needing this procedure, which caused me to go into a depression. The operation took a long time because my doctor admitted that he had never had an intersex patient before. Afterward I learned that I actually had one ovotestis, which explained some things about my body. I never knew I was intersex until much later in my life, due to doctors not using the term. I found out from the internet and making connections to my experiences and personal medical records.

Frank

I'm honored to be this representation for so many people, especially young queer kids and disabled kids. When I made my first introduction video, someone made a TikTok where they were crying. They said, "That is a Black, plus-size, disabled and Autistic actor on stage." That was the first moment that I realized this is so much bigger than I thought. There's so many stories about intersex trauma, and I want to share stories about intersex joy.

Apollo Robert

Most of my experiences being intersex revolve around my experiences with disability. Because of my intersex variation, MRKH, I was born with only one kidney and total deafness in my right ear.

I experienced more pressure to be "normal" from audiologists than I ever did from specialists typically associated with intersex care. It's called audism, the prioritization of hearing over deafness. I specifically didn't get the CROS hearing aids that I have now, that I could have had as a kid, which are made for those with unilateral deafness, because [some] thought I should just learn to cope with it. I was blocked out of a lot of social interactions in childhood as a result because my peers were chatty and didn't have the attention span to repeat themselves and be accessible for me. After school, I would decompress in my room for hours. I was so tired and overwhelmed from auditory processing. CROS hearing aids would have changed my life tremendously.

I get scared to advocate for myself [with] doctors. I'm always trying to be a nice, model patient. If you're going to be working with kids that are potentially intersex, disabled, or trans, you need to know how to work with people that have non-standard bodies. Most of it comes down to listening, supporting them, and acknowledging when you don't have the knowledge.

Justin Tsang

There are a lot of commonalities in being both disabled and intersex. I am constantly advocating for my needs, even though many medical and legal professionals might not fully understand the context of why I need the supports that I do.

For many disabled folks, cochlear implants and ABA therapy are used to "fix" something that needs to be "cured" or become "normal." This is similar to the non-consensual medical interventions that intersex folks encounter at birth and at young age. In my case, the different surgeries I did get when I was young actually caused more pain and an increase in my UTIs, which resulted in more hospitalizations.

Before I went to college, I was primarily on Social Security Income (SSI), so I only had Medicaid for health insurance. In the whole directory of doctors in my county, none specialized in seeing intersex folks who have undergone major reconstructive surgeries as a child. This is what we see across the U.S., and it gets worse for adults, where much of the care is non-existent. I was told by my pediatric urologist a few months ago that there are likely only four urologists in the U.S. That could possibly see me.

One of the key issues is for intersex and disabled folks who are applying for [certain] disability benefits. The Social Security Administration requires all of your documentation from different providers, but many intersex people struggle to get their medical records. Hospitals often have a retention period of one year after a patient reaches 18 to 25, depending on the policy. Many people don't know they're intersex until they're adults due to stigma and medical gaslighting. And for people who are adopted, obtaining these records may be impossible. Further, reviewers and providers rely on test results under the assumed sex at birth. [This system] doesn't understand that intersex folks live with a variety of different hormone levels. Misinterpretation could cause the potential for an intersex and disabled person to be denied benefits when they shouldn't be.

Being intersex and disabled isn't about the challenges I face. It's about the strength I've developed, the perspectives I've gained, and the person I've become. It taught me to stand up for myself and others, to question societal norms, and to appreciate the beautiful diversity of the human body and mind.

Elliott L.

I found out that I was intersex several years before I became more disabled by my other chronic illnesses, so my intersex identity felt more relevant to my life at first. When I was first diagnosed in 2015, I had an incredibly hard time trying to discover any information about intersex community. It took a lot of research in archives of primary sources just to find out that intersex people did have a powerful history of activism.

Embracing my disabled identity was a parallel process in so many ways. As a wheelchair user, it's really important for me to define my own disabled identity outside of the medical system or ableist ideas from an inaccessible society. For me, one of the most important parts of my disabled identity is the powerful community we build to fight for justice. In both the intersex and the disabled communities, we get really good at caring for each other. When you're part of a community that's been excluded from accessing knowledge about your body, your health, and your needs, it's meaningful when we can redistribute power from medical authority back into the hands of intersex and disabled people.

Even though there are many similarities and solidarity between the intersex and disabled communities, sometimes I still feel complicated about whether I want to consider my intersex variation a disability. "In an environment with so much pathologization through Disorders of Sex Development language, it can feel difficult to publicly talk about our intersex variations as disabilities. [Like many intersex people, I have felt] like we have to be the representative of every intersex person ever, rather than having the space to exist with a lot of complexities. For a while, I wondered if I would be betraying intersex activism if I also acknowledged the fact that part of the reason I was losing my mobility was because of my intersex variation."

In an intersex and disabled future, I want us to have space to celebrate all parts of ourselves without feeling like we have to hide. Not only do we exist, we're out here existing joyfully, and I want our intersex and disabled futures to reflect the power of our liberation.

Originally Appeared on Teen Vogue

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When "Inclusion" Fails Kids

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I love looking at pictures from my daughter's first day of preschool. Three years old, wearing a dress with pink apples on it. I had perfected getting her hair into pigtails just a few weeks before. There was something joyous and hopeful about those little hair geysers sprouting straight off her head. In the photos from that day, we look like any other family on the first day of school. My boys, ages 4 and 6, wearing new future-oriented pants that look a little too long, are smiling proudly at the thought of their sister joining them. It was raining and unseasonably cold; our raincoats seemed out of sync with our end-of-summer tans. In one picture, Mae is leaning into my lap, her yellow raincoat and pigtails buried by my scarf as I give her one last kiss.

Mae and I walk her older brother Ben to his first-grade classroom. Colin Sanford; Courtesy Katherine Osnos Sanford

We appeared to be a conventional family from afar, but we weren't. Mae wasn't like my other two children. She made repetitive noises and movements, barely slept, never spoke, and seemed plagued by a never-ending carousel of ear infections and rashes. When she started school, she was classified as PDD-NOS, or "pervasive developmental disorder-not otherwise specified." Although she was 3 years old, developmentally, her age was estimated to be between 13 and 17 months. A month after her first day in preschool, she was officially diagnosed with autism. With the right therapies and some good luck, we were told the gap between our daughter and her peers might be narrowed—if not closed. So, for the next decade, we did everything we could to solve the puzzle that was our daughter's brain: hours and hours of therapy, specialists, the occasional snake-oil salesperson, chat rooms, lawyers, and—yes—the public school system.

That was 14 years ago. Mae has grown into a young woman who loves music, bubble baths, and peanut butter. She can get a map of a place in her head in seconds and can quickly scan a room and identify who would be most likely to bend to her needs. In other ways, though, her developmental age is still under 2 years old. She is still in diapers; she communicates with hand gestures and noises that make perfect sense only to those of us who know her. As her older brothers' academic and social lives have traced the predictable trajectories of adolescence, hers have been characterized far more by what hasn't changed than what has.

This is where the current model of education for children with disabilities is a mismatch for her: Even though her developmental age is that of a preschooler, well-intentioned policies known under the blanket term of "inclusion" put her in a building of high school students with whom she has little in common.

My daughter's school-based occupational therapist and I have often spoken wistfully of a school site with an OT space where students could learn practical life skills, where my daughter would spend her days learning to make a peanut butter sandwich or brush her teeth or make a bed or comb her hair. Or, most importantly, learn how to take herself to the toilet. The hours and hours she and I spend together in the summer on potty training are paused every time school starts. It is lovely to think that putting her in a small classroom adjacent to neurotypical students would somehow improve her experience. However, if she learned through osmosis or observation, she would be someone else altogether.

Still, I see this issue from two perspectives. I am the parent of a child with complex needs—and for the last eight years a general education middle school teacher. I believe that she has every right to a high-quality education in our public school system. I also believe, however, that what she learns is more important than where she learns it. The gap between my daughter and her neurotypical peers has grown into a galaxy. I am pretty sure she does not look at the long-legged teens twirling car keys at her school and wish she were one of them. (I think one of the gifts of her condition is that envy or insecurity aren't part of her experiences.) But one of the liabilities of including her in classes with her chronological peers is that the important life skills that she lacks are not on the curriculum.

Students in my classroom also have a range of needs; some are neurodivergent, others aren't, but none of them have demands as complex as Mae's. As a parent and as an educator, I have been increasingly troubled by the gap between good intentions and lived experience in our schools, one that seems especially sharply drawn with children like my daughter. This question of where a child with disabilities learns and with whom is deeply complicated, in part because the term "disability" is applied very broadly. It now includes everyone from a child with mild dyslexia or similar processing issues to a child like mine. Is there a unified strategy that can meet these varied needs? Have we progressed from a time when children like my daughter were shut away from society to the present day when we use the myth of inclusion to mask the fact that we are still not truly creating schools to meet the needs of all children effectively?

Inspired by the desegregation of schools and the civil rights movement, in the late '60s and early '70s, disability rights advocates started pressuring Congress to address education for children with disabilities. Leading disability rights activist Judy Heumann, who worked with a congressional team to draft legislation, recalled in her book Being Heumann: "The country was so inaccessible, disabled people had a hard time getting out and doing things—which made us invisible." Disability rights activism changed this. Back then, many children with disabilities never went to school at all. There was no expectation that a local public school could or would meet their needs. In 1975, the Individuals With Disabilities Education Act, known as IDEA, passed. The New York Times around that time quoted Dr. Philip R. Jones, president of the Council of Exceptional Children, describing the measure as "a landmark for education of the handicapped in our country," adding, "It is overcoming 200 years of sin." After describing the bill's emphasis on individualized curricula, the Times also reported: "Another sensitive portion of the legislation deals with what has come to be known in education as the issue of mainstreaming. That is the extent to which the handicapped should be isolated in classes of their own or mixed in the so-called mainstream with the nonhandicapped." Today, nearly 50 years later, across the United States, there are 7.3 million children with disabilities currently receiving services in the public school system, according to the Pew Research Center. They represent about 15 percent of all public school students. IDEA seeks to help them by mandating "free and appropriate education" for all children and requiring that students be educated in the "least restrictive environment," or LRE. The law states that "to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled." LRE is descended from another legal standard—the least restrictive means test, which is used any time a law or government may impede on a person's civil liberties. These days, it's often the rationale for placing children with disabilities in schools with their chronological peers—often referred to as "inclusion or mainstreaming." Broadly speaking, authentic inclusion of disabled children is necessary and important because, just as with any child, these children are as deserving of a high-quality education that meets them where they are. But for my daughter, and for children with similar profiles, the practical effect is that, rather than spend her days on skills she needs—brushing her hair and teeth, going to the bathroom—she spends them in a large public high school, sitting in a classroom located beside a loud, distracting cafeteria, working on some pseudo-academic curriculum that is based on videos of current events. The thought of her sitting and watching videos on the marvels of weather and then being asked to fill out a worksheet on what she just watched is absurd. Her worksheets about tornadoes or growing potatoes appear to have been scribbled on by a toddler. As we have seen, in practice, the whole concept of LRE is often reduced to the setting where a child learns. But Dr. Mitchell Yell, a professor at the University of South Carolina and an expert on legal issues in special education, explains: "It is actually much more than that. It's the facilities, personnel, and location. It's a web of services." When I asked Yell about how the concept of LRE had come to represent a physical place, he said he wished they had instead called it "LRAE—least restrictive appropriate environment." He added, "Perhaps then the emphasis would have remained on what is appropriate for that individual child, rather than simply what was available." As a teacher of social studies, I see 86 middle school students a day; at any given time, I can have as many as 35 in a class. In order to succeed, one of them may need to sit in the front row away from his peers, while another may need to be in the same seat every day flanked by his best friends. One may never remember to bring his backpack, so may need to keep a folder in the room and a steady supply of pencils and other reminders; another may complete every assignment the day that it is given and ask for additional reading. Teachers are like short-order cooks serving up our subjects. At best, we can tailor every lesson, assignment, fact, and expectation to the child in front of us. It is why the job is both so hard and so rewarding. When you crack the code of how a kid learns, you open up some small but important part of the world to them. About two-thirds of children with disabilities are included in the same classrooms as their general education peers. Some, with dyslexia, for instance, or ADHD, have modified assignments, tests without time limits, or support for note taking; others are pulled out for speech or OT services. In some cases, students are accompanied by one-to-one aides. For the most part, these students are able to operate in a general education classroom and still get the support they need. Children like my daughter, whose needs are more complex, tend to be in "special day classes" (SDCs), usually in the same building as their typically developing peers but in a dedicated classroom. Part of the intention of LRE was to avoid the segregation of people with disabilities, so they could attend their neighborhood schools and build relationships in their community. Plus, these schools already exist, equipped with cafeterias, art rooms, and athletic facilities. It is far less expensive for districts and counties to tuck disabled children on the edges of existing facilities than to really address their needs. I live in Northern California, and the SDCs are managed by the county, not the local school. In functional terms, the county-run SDC is a guest at the high school, but local school or general education teachers have no authority or responsibility to monitor what is happening in that classroom. I have often worried about Mae's safety in these siloed little classrooms an hour from our home with no daily on-site administration. Her program manager visits her class twice a week, and that is the only oversight or accountability for the teachers and staff who work with her. Midway through the last school year, we got word that our daughter was struggling in class—huge tantrums every day, screaming, crying, hitting herself. We learned about this because the school nurse reached out to ask whether we were seeing the same behaviors at home (we were not). Only then did I learn that her dedicated one-to-one aide had been away from the school for a month. (My daughter, of course, was not able to tell us.) Then we learned that some complex medical issues would keep the head teacher out of the classroom for the rest of the year. Plus, the program lacked a consistent occupational therapist. The replacement teacher had no teaching credentials at all, let alone experience with children with disabilities. I was told by a county administrator that the replacement teacher's wife had taught disabled children, so I needn't worry. The result was that Mae spent most of the school year in a classroom without a credentialed teacher and with a rotating cast of occupational therapists. Had it not been for the consistency of her one-to-one aide (who returned after the first month of school), my nonspeaking child would have found herself surrounded by under- or unqualified strangers. Mae, in eighth grade, spends her days with a series of specialists and classroom aides. Cindy Evans; Courtesy Katherine Osnos SanfordWhen parents believe that schools are failing to provide an appropriate education for their child, they can sue for a better placement or services, such as a special school or home-based care or what is classified as "most restrictive," which means a hospital or residential facility. Unsurprisingly, parents with resources tend to be able to hire lawyers and advocates so their children will have access to specialized private schools or obtain additional services and support. In some cases, these parents can get public funds to cover the cost of a private school that best meets the needs of a student, though this puts heavy financial burdens on school districts and creates serious equity issues. Inclusion works well for some children with significant disabilities. Not long ago, I spoke with Janee Adams, whose daughter Ruby has Down syndrome and recently graduated from high school. Ruby went to a large public high school in her district, where her mother said she "got to be one of one, everyone knew her." However, Adams had to fight every step of the way. She hired an advocate and created alliances within the school community so other parents supported Ruby's presence in the classroom. With Adams' daughters so close in age, they often were in the same class—one of the reasons Ruby loved school. Some of the more challenging social elements of inclusion were easier because the girls could have friends sleep over at their house together. Now that Ruby has finished high school, Adams told me that she is in a day program that has helped her find employment and holds her accountable in ways that often didn't happen in school. "Ruby loves it," Adams says. "She has never been in a place where she completely belonged before, and she is just so happy." Our family also has had experiences when inclusion was truly remarkable. Two years ago, my daughter's teacher collaborated with the theater teacher to create a performance that was written and performed by both general education students and the students in Mae's class. When the play began, Mae was sitting on a couch while Nirvana blasted through the speakers. She loves music and the students working with her had realized that Nirvana was a special favorite. The student actors would weave it into their story when occasionally Mae would jump up off the couch or laugh loudly. It was a wonderful experience to be at my daughter's school for something other than a meeting, where the typical kids described how much they learned from working with their disabled peers. In our home, my sons have gained so much from having a sister with complex needs. Their friends who have grown up with Mae also display a level of understanding and empathy that only comes from authentic relationships. Some school districts offer a partial inclusion model for students who fall in between inclusion and SDC, where students with disabilities share some low-intensity classes—such as PE or art— with their typically developing peers but are sequestered in other classes for academic programs. I spoke to a neurodivergent student who attends one such program at the large public high school from which my sons graduated. She also holds a job at a local smoothie shop. "I met these mainstream girls last year in PE who I wanted to be good friends with because we had a good conversation," she told me. "I don't think they knew how to interact with the neurodivergent kids." She continued: "I feel like I'm stuck in a cage with only special needs students that can see me and interact with me. And the mainstream girls think I'm invisible." She may take PE or electives with her neurotypical peers, but when she wanted to take the genetics section of a science class or manage the swim team, she was told she could not. When her parents pushed back, they were told that the coach of the team did not have the capacity to have her on as a swimmer or manager. They were told that the science class was "not a good fit" even though their daughter had independently done hours of research about her own chromosomal deletion. She longs to be included in the daily goings-on at the school, but without the concerted efforts of both students and staff, she and her peers will operate as though they are of a different caste—functional enough to be adjacent to their typically developing peers, but never admitted into what seems to be an exclusive club. Without standards to define or measure "inclusion" or its benefits, it becomes one of those educational policies that sound good on paper but are rarely as beneficial to the students they are designed to help. When we make inclusion the goal over excellence, we are "putting the where before the how," says Douglas Fuchs, a leading researcher on human development and education for children with disabilities at Vanderbilt University. Fuchs told me his research team created a national database of reading data from 1998 through 2015 for students grades K-12. After analyzing the data using "multilevel growth models," they found "that mainstreaming, or general classroom placements, did not strengthen the academic achievement of most students with disabilities." In 2022, the Campbell Collaboration, an international research organization, published a report saying inclusion did not seem to show any positive academic or social-emotional benefit to students. In fact, students who were taught separately in settings designed for them experienced better outcomes. The longitudinal studies are clear about how blanket policies of inclusion can actually inhibit student progress. In summarizing what we know about inclusion, Fuchs says, "Fifty years of research indicates that placing students with disabilities in general classrooms fails to provide the necessary intensive and expert instruction these children and youth need to succeed in school and in life afterwards." This means that for some students, the general classroom is an appropriate placement, but for many, there need to be other school-based options that are better suited to meet their specific needs. In my classroom, there were students with various diagnoses who spent most of their days in general education and were able to follow much of the curriculum. I have seen moments of enormous grace: when students connect over a beloved video game or when a child with autism will blurt out a question that their peers are too shy to ask. For a moment, they are a hero. I have also cringed as the same child picks their nose, not noticing that their peers are recoiling, or doesn't realize that the clothes they refuse to change may smell. The parent in me dies a little every time I catch the flicker of irritation on a student's face at the thought of having to work with a peer with disabilities. Or when I look out at lunch and see clusters of students all over campus and then one or two lone kids not really excluded, but not fluent in the language of adolescence. I have often wondered whom our well-intentioned efforts benefit. Do the kids really learn to be tolerant of people who are different than they are? Do kids with disabilities learn to live more easily in the world simply because they are surrounded by it? I know they sometimes feel left out, aware that there are sleepovers they don't attend and jokes they will never get. Are those painful feelings worth the experience of being in their local public school classroom? I've seen how students with complex needs can often confirm the biases of their peers by behaving strangely or having inappropriate outbursts in the classroom. It is one thing to be polite to a kid with disabilities in the context of your eighth-grade classroom; it is another to invite them to your birthday party. So what would the best option be? I asked Bill Koski, the founder of Stanford's Youth and Education Law Project, about which country might have the most advanced models for raising childre