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ableism, Advocacy, Autism, Dating and sexuality, Family, Solidarity2

What’s My Age Again: Why Mental Age Theory Hurts People with Intellectual and Developmental Disabilities

“Difficulty doing specific tasks isn’t the same thing as being an actual child. … I not mentally 12. I am mentally 28. I just have an intellectual disability.” -Ivanova Smith, adult with an intellectual disability
“You can support people without condescending to them. … Yes, I’m an adult. That doesn’t mean that I don’t have support needs. Rather, it means I should be able to share what my support needs are and direct the means by which I receive support.” Finn Gardiner, adult with a developmental disability

At least one form of discrimination in our society is alive and well. We discriminate against young people, every day, in policy and in practice. For example, in the United States, we don’t let people drive a car until they’re 16, vote until they’re 18, or buy alcohol until they’re 21. We deny freedoms to our citizens based on age alone, and it’s not even very controversial.

I’m not going to challenge age minimums in this post. I’m just using this as an example to shed light on a more problematic form of discrimination related to perceived age. This is the infantilization of adults with intellectual and developmental disabilities (IDD), based on a concept called “mental age.” Like chronological age, people use “mental age” as a shortcut to judge the maturity and competency of others, but the consequences of judging people by their “mental age” can be far more serious.

The concept of “mental age” was first introduced by Alfred Binet, co-creator of the first IQ tests, in the early twentieth century. Generally, “mental age” has been measured by comparing an individual’s score on a standardized IQ test with the average performance of their same-age peers. For people with IDD, “mental age” may also be estimated by comparing the person’s demonstrated physical, speech, adaptive or cognitive skills against the average for various age groups.

Not surprisingly, “mental age” came about alongside the eugenics movement in the United States. Mental ages were used to classify various groups of “feebleminded” individuals by severity: Adults with a mental age of 9-12 years were classified as “morons”; those with a mental age of 6-8 years were classified as “imbeciles”; and those with a mental age of 2-5 were classified as “idiots.” Individuals from any of these groups were thought unfit to reproduce.

Besides the disturbing history of mental age theory, using mental ages to classify individuals is problematic because:

First, mental age oversimplifies: Boiling an individual’s intellectual, developmental and adaptive functioning down to a single number obscures that person’s complexity. Some individuals may be highly skilled or knowledgeable in some areas, but experience impairments or naivete in others. Tests that measure only one or a few kinds of intelligence can miss other kinds of intelligence or compensatory skills that the individual uses. Intelligence test scores can also be biased by social and cultural factors unrelated to actual intelligence or skills.

Second, mental age is treated as a ceiling: Chronological age is, by definition, a dynamic concept. People are constantly aging, and this is part of the reason why age minimums are considered relatively acceptable in society: They are temporary. Eventually, everyone will get old enough to drive, vote, or buy a drink. In contrast, though, mental age is often described as a limit that someone reaches and cannot exceed. An adult with IDD may be labeled as having a mental age of 3, 7, or 10 years old, and once that mental age is reached, they are expected to think and act that way for the rest of their life. For example, in the 2001 film I Am Sam, the protagonist-a single father-is labeled with a mental age of 7. It is strongly implied that he will no longer be a fit dad after his child turns 8 because his daughter will continue developing while his development is locked. Although adults with IDD may reach plateaus in certain skills, everyone has the potential to adapt or improve their life circumstances. There have been powerful stories of adolescents or adults with severe communication impairments, for example, who showed great leaps in communication skills when presented with the right technology, the right support person, or both. Oftentimes it was discovered that these individuals had knowledge or skills that they had been unable to express to others in the past. Mental age labels artificially restrict that growth process. (Ironically, Alfred Binet himself believed that intelligence could change over a person’s life, but the IQ tests he helped design have been taken out of that context).

Most important, mental age is used to control freedoms and support: Outside the disability space, we understand that younger children usually need more support than older children and adults. We also reserve some freedoms (like driving, voting or buying alcohol) exclusively for older teens and adults. In the disabled world, too, presumed mental ages are used to deny freedoms. Even if a teen or adult with IDD is not explicitly labeled with a mental age, the prevailing belief that people with IDD are childlike leads too many parents and educators to infantilize them. For example, Finn Gardiner writes:

Infantilisation is very familiar issue to me. I myself have a developmental disability and my parents—my father in particular—infantilised me as a teenager and as a young adult. I wasn’t allowed to do what many of my peers were allowed to do; my parents claimed that I ‘wasn’t ready’ for many of the things everyone else my age seemed to be allowed to do, like going to school dances. My parents restricted what I read, thinking that I wasn’t mature enough to handle heavier themes in books, TV and films despite encountering similar subject matter in my assigned readings at school. They would force me to attend church even when I’d told them clearly that I was no longer religious; they justified this by claiming ‘in our house, we serve the Lord’, even though I was only going through the motions of practising Christianity. … When I was nineteen years old, my parents installed parental controls on my Windows account. … I was old enough to vote. In fact, I had voted when I was eighteen; I distinctly remember being eager to vote against George W Bush in 2004. My parents didn’t always give me the right to try, or if they did, they would do it begrudgingly and blame me if whatever I tried didn’t work out, instead of listening to me and working with me to identify strategies that did work for me. For them, supporting me entailed controlling me.

As Finn points out, these actions are not just insulting and frustrating, but could also be dangerous. A teen or adult with an IDD still has desires concomitant with their chronological age, including a desire for autonomy. An individual who has been infantilized may gravitate toward peers who seem to respect their autonomy. If that same individual has never been educated about sex, drugs, or other issues relevant to their chronological age, they could be an easy target for abuse and exploitation.

And, age can be used as a weapon in reverse, too. An adult with IDD may be denied supports due to their age, or admonished to “act their age” during a public meltdown, for example. But, many nondisabled adults have meltdowns, too. (We might see one on the floor of Congress today). Being an adult does not mean one lacks support needs, just as having support needs does not mean one is essentially a child.

So, how do we combat thinking based on mental age theory?

First and foremost, we need to separate maturity from support needs. Ivanova Smith suggests some ways in which we can concisely describe another person’s support needs without any reference to mental ages. For example:

Ivanova can’t drive due to developmental disability that causes them to have struggles with multitasking and hand eye cordination.
Ivan needs help across busy streets because they don’t understand traffic very well and need support to be safe.
Ivan may need support with emotional regulation because they process emotions differently than other people.

In a related vein, disabled children often receive primary support for disability-related needs from their parents or other family caregivers. Once these children become adults, they may still need human supporters, but having a parent continue to be the disability-related support worker can become a conflict of interest. When parents support their children, they hold authority in the relationship, but when disabled adults get support from people like readers, sign language interpreters or personal care assistants, they benefit from being the one in charge of the interaction. For example, when I was a child, my parents read to me often. They controlled what, when, and where the reading took place, which was entirely appropriate when I was a small child. As an adult, I still need human assistance accessing print, but I need to be the one in charge of what is being read to me. It can be difficult for a parent and adult child to renegotiate a supporting relationship in such a way that the parent is essentially working for their adult child (even if unpaid). It is important for adults with IDD to have self-determination, to the greatest extent possible, in directing who will support them, with what, when and where this support will occur. Depending on the resources available to that individual, and their specific impairments, family members may need to be involved with some of that process. This can work, but only if the family member(s) are willing to consider the disabled adult as someone with their own voice in decisionmaking.

Sources:
Ivanova Smith: Mental Age Theory Hurts People with Intellectual Disabilities
Finn Gardiner: Parents, Do Not Infantilize Your Teenage and Adult Disabled Children

Advocacy, Dating and sexuality

DAMn. #MeToo [Repost]

“While I think we spent a lot of time thinking about how we educate people outside the little person community to treat us with a modicum of respect, I also think we need to have a real critical conversation about and within our community as it relates to our own #MeToo moments.”

Recent events in U.S. politics have forced us to reflect on the painful realities of sexual assault. Disabled people face a heightened risk of all kinds of abuse-physical, sexual, emotional and financial. Much of that abuse comes at the hands of nondisabled people, including family members and caregivers. But we must also work within our own disability communities to create a culture of respect and safety for all. Organizations like Little People of America (LPA) can offer valuable safe havens from the ableism that we encounter in the wider world. But the frustration that people may carry into these communities, if we aren’t careful, can lead to abuse. In this article, Rebecca Cokley reflects on her own experiences in LPA, and what she is teaching her children about respect and consent. Rebecca Cokley is the director of the Disability Justice Initiative at the Center for American Progress.

DAMn. #MeToo

Dating and sexuality, Family

#Disabled and Child-Free: Disability and the Right of Reproductive Choice

Today on the Weekly Wisdom blog, I’m going to share something personal.

I’m 33 years old. My husband and I just celebrated our five-year anniversary. We have no children, and that’s by design. We’re a “child-free couple” as some might say. And, this afternoon I will be receiving a birth control implant in my arm, which means there’s a 99.95% chance that we will be staying child-free for at least the next 3 years.

So, why am I sharing something this personal on my professional blog? What’s this got to do with disability?

Absolutely nothing. Zero, nada. And that’s the point.

Sometimes it’s assumed that disabled people shouldn’t have children. It’s thought that we can’t be fit parents or provide good homes. Or, it’s thought that we shouldn’t pass “bad genes” on to the next generation. Not too long ago, some disabled people in the United States were involuntarily sterilized. Even today, a disabled person’s right to parent is only protected in a handful of states. On the flip side, when a disabled person does have kids, some people assume that the kids are supposed to act as helpers or even take care of the parent. The kids may be seen as means to an end.

My and my husband’s choice to be child-free has nothing to do with my disability. I know I could be a good parent with the challenges of my disability, and I couldn’t care less if somebody inherited my blindness. I am child-free because I simply have no desire to be a parent. I’ve never been a “kid person” and the idea of living with kids 24/7 and having them depend on me for their basic survival terrifies me. I’ve felt since adolescence that I have skills and talents in other areas, but childrearing isn’t one of them. I’ve never felt the biological drive that other women say they have to pass on their eggs. I do care deeply about the coming generation, I love my niece and nephews and care about my friends’ children, I have generative and nurturant instincts I follow in other ways. I am in awe of the vital work that parents do, but it’s just not for me. Perhaps there’s a deep reason related to my own childhood and the fact that I couldn’t wait to grow up, or perhaps it’s just an orientation I have, in the same way that some people have always longed to become moms or dads and see that as fundamental to who they are. Although I haven’t wanted kids, I’ve always wanted to marry a man ever since I read the proposal scene in Little House on the Prairie when I was in third grade.

People with disabilities run the entire gamut in terms of our orientations toward gender, sexuality, and parenting. Our families, partners, friends, and healthcare providers are wise when they support our freedom to make choices about our own bodies and our own lives.

Three years ago I had just moved to Seattle and I had a well-woman exam with a new doctor. At the end of the exam, she told me that if I ever did decide to become pregnant, I could come to their prenatal clinic and that she would be happy to prescribe prenatal vitamins. I could have gotten offended that she was just assuming I would want babies someday, but instead, I was delighted that this doctor didn’t see my disability as an impediment to parenting if that was what I wanted. She offered me the same services that she would offer her other 30-year-old female patients, and was willing to provide support so that I could have a healthy pregnancy. This helped us establish a higher level of trust in our patient-physician relationship.

The freedom to choose a child-free married life is not one I take lightly. Around the world, many disabled and nondisabled women cannot choose this life for a variety of reasons. Others long to become parents, but face physical, attitudinal, financial and other barriers. As much as I will defend my own right not to have kids, I will fight to the end so that my disabled brothers and sisters who want to parent have the right to do so.

I am grateful that, as a blind girl, I received early sex education at home and braille books about birth control so I could learn about all of my options without the information being filtered through another person. I am grateful that I grew up hearing that any orientation I developed toward sexuality and parenting would be valid. I am grateful that my spouse respects what I want to do with my body. (Even when we were toying with the idea of parenting, he suggested we could adopt if I didn’t want to deal with pregnancy and birth). As I prepare for my appointment today, I am grateful that the White Cane laws will allow me to get there independently, and the Americans with Disabilities Act means I can get help signing the informed consent and reading the aftercare instructions for my implant. I am grateful that my implant will only cost $30. I am most grateful for systems and supports protecting my basic agency to make decisions.

Many of my disabled brothers and sisters still struggle to realize their family dreams. Some are barred from romance by well-meaning, or ill-meaning caregivers. Others have suffered sexual abuse that has a lasting impact on their experience of relationships. Still others are isolated and go to bed each night longing for a partner they cannot find. Some of my disabled brothers and sisters have fallen quickly into marriages or parenthood they didn’t really want, because they feared they could find nothing else. Our family freedoms are still restricted by widespread lack of transportation and accessible, affordable housing; healthcare barriers; and the widespread belief that we can’t or shouldn’t govern our own family lives. Let’s work together to build a world where all of us, including the disabled among us, can have the family lives we want.

ableism, Dating and sexuality, Solidarity2

on the Desexualization of Disabled Women

One of the most pervasive stereotypes about disabled people is the idea that we’re uninterested in, or unfit to be in, sexual relationships. This stereotype affects both disabled men and women, but because women’s social standing is so often tied to our potential roles as wives and mothers, disabled women frequently experience a particular brand of ableism.

Disabled women face a heightened risk of sexual abuse and assault. In addition to this, we often encounter more subtle, unintentional actions-particularly from nondisabled men-that serve to infantilize, desexualize or violate us. Like other “microaggressions,” people who do these things may not even realize that they are doing any harm.

Recently a Facebook friend of mine asked her disabled, female-identified friends to describe these kinds of experiences we have had with nondisabled men-particularly unintended violations that may come under the guise of helpfulness. The below list is a combination of the responses on this Facebook thread, my own encounters, and those of my close female-identified disabled friends. I share it with the hope of making readers aware of the kinds of things that can happen and how they can be prevented. A caveat: Many of these microaggressions are also committed by women; however, the gender dynamic between a male and female (particularly when the nondisabled male holds power, such as the case of a male taxi driver and a disabled female passenger) makes the below actions especially problematic.

Women described being “guided” or lifted by unfamiliar men, in the name of helping, but in invasive ways (e.g., with hands under the arms, on the shoulders or on the hips) without permission. Or, during casual conversation, having a male acquaintance rub or pat their arm or leg.

On a related point: having male taxi or Uber/Lyft drivers buckle them into a seatbelt, without permission and even when they were physically capable of buckling themselves in.

Having a man place a woman’s hands on their body or on an object, particularly if the woman is blind, as a way of “showing” something (again, without permission) or having a man push a blind woman to touch his face (either as an attempt at a pickup line, or under the myth that blind people like to explore faces by touch).

Verbal blends of ableism and sexism: Men on the street shouting comments such as “You’re too pretty to be disabled” or “You’re skinny for a blind person.”

Some women with service animals said that strangers (on the subway, for example) would casually reach between their knees to pet their service animal. Or, a stranger might reach down between a woman’s legs to “help” her retrieve a dropped item. (Again, both men and women perpetrate these actions, but it is more threatening when done by a man).

Invasive questions: Several women described having male Uber/Lyft drivers, for example, ask if they lived alone, which is especially invasive if the driver is taking them home. Others said they were asked by strangers if they have romantic partners, how they have sex, how they put their clothes on, or “who takes care of” them.

Shocked reactions when women reveal that they are dating someone, engaged, married, pregnant, parenting or interested in parenting.

Being obviously ignored as a potential dating partner. I had the experience a few times in high school and college, when a guy would be very friendly toward me, seeking me out for conversations, asking for my phone number, even inviting me out on what I thought might be a “date” and I would later find out that the guy either had a girlfriend the whole time, or simply showed no romantic interest. Another time, at a middle school dance, a very attractive, popular boy begged me to have the last dance with him, then never spoke to me again (making me wonder if it was a bet).

Being called infantilizing pet names like honey, sweetie, or baby, and spoken to in an infantilizing tone of voice.

A blind lesbian acquaintance of mine said that someone once told her that if she could just see what men looked like, she would be straight.

A disabled person who is gender-nonbinary was asked if they knew the difference between men and women.

A man following a disabled woman, or asking where she is going, under the guise of being helpful.

And many variations on the above, some well-intended, others not so much.

What steps can nondisabled men, and women, take to reduce these microaggressions?
The answer is actually quite simple:

Start by understanding that disabled people, including those of us with cognitive disabilities, experience all sexual orientations and gender identities; have sexual boundaries; and many of us desire, and participate in, intimate relationships.

Before performing a particular action toward a stranger with a disability, ask yourself, “Would it be socially acceptable to say/do this to a nondisabled stranger in my culture?” If the answer is no, don’t do it.

If you ever have any doubt as to whether a disabled person desires hands-on support with a task, ask first. For example: “Do you need any help with your seatbelt?” is a thousand times better than wordlessly coming up and buckling the seatbelt. By asking first and respecting the answer, you can never go wrong.

Blind in the City, Dating and sexuality

The Top Ten Advantages of Dating Sighted and Blind People

I first read this brief article (reprinted below) when I was seventeen and in high school. At that time I hadn’t started dating yet, and didn’t know much about the concrete details of dating. Like many teens I often thought about dating and, of course, the related physical activities. Although I had always been told I could fall in love and marry someone if I wanted to, I was also beginning to wonder if my blindness would hold me back from this goal. Many sighted guys seemed to look right past me as a possible partner. Some of the guys in my circle of friends were blind, and in some ways, dating a blind guy seemed less complicated. But, I got the sense that many people expected me to end up with someone sighted, who could “take care” of me. It made me doubt what I could bring to a relationship.

This article gave me hope that dating and marriage were things I could look forward to as a blind woman. It also makes the point that a partner’s disability or lack thereof has little to do with the quality of a relationship.

Since reading this article, I have dated both blind and sighted men. The man I married is sighted. I am happy to say I have experienced nearly all of the positives listed for both types of relationships. Each relationship was its own adventure, and in each case, my partner’s blindness, or mine, has had little impact on the course of the relationship.

I found this article a few years ago in my old files, and shared it with my then-boyfriend, now-husband. We had just started living together at the time. I emailed him the article, and that night he “accidentally, on purpose” kissed me on the nose. I suppose that was his way of assuring me that he may be sighted, but he’s still “blind at heart”, which in many blind circles, is a high honor.

The author of this article, Priscilla McKinley, passed away in 2010. She was a writer, teacher, and advocate for access and inclusion. I was glad for the opportunity to meet her at an NFB convention just before I started college. I am reprinting her words so they can continue to inspire others.

The Top Ten Advantages of Dating Sighted and Blind people

By Priscilla McKinley

From time to time at NFB conventions and other gatherings of blind people, someone raises the question whether it is preferable to date a blind person or a sighted person. This list shows that there are certain advantages either way you look at it.
10. Dating a sighted person means you have a sighted guide when some idiot smashes into you and breaks your cane on your way to class.
Dating a blind person means you have a spare cane when some idiot smashes into you and breaks your cane on your way to class.
9. Dating a sighted person means you have someone to keep you from kissing a nose instead of the lips.
Dating a blind person means you don’t care if you give or get a kiss on the nose instead of the lips.
8. Dating a sighted person means you can take drives in the country on weekends.
Dating a blind person means you can have private NFB conventions on weekends.
7. Dating a sighted person means you have someone to blame when you collide in the hall.
Dating a blind person means it’s no one’s fault when you collide in the hall.
6. Dating a sighted person means you have someone to describe what’s going on during the silent moments of a movie.
Dating a blind person means you have time to get popcorn or go to the bathroom during the silent moments of a movie.
5. Dating a sighted person means you know who’s going to drive on your next date.
Dating a blind person means you know you’re going to take the bus on your next date.
4. Dating a sighted person means you have someone to tell you if your socks match.
Dating a blind person means you have someone who remembers whether you cut the tag out of your orange or your purple shirt.
3. Dating a sighted person means there’s someone to tell you when you have a piece of broccoli stuck between your two front teeth.
Dating a blind person means no one notices when you have a piece of broccoli stuck between your two front teeth.
2. Dating a sighted person means you can ask questions like, “What’s the expiration date on this milk?” and “Does this look infected?”
Dating a blind person means you can ask questions like, “What’s the Braille symbol for S-I-O-N?” and “Does this feel swollen?”

Okay, okay. Hold on. I’m not going to give you the Number One advantage of dating sighted and blind persons until you hear me out. I have some important things to say here. Really!

As students, many of you have dated, are dating, or would like to date. Some of you may have pondered the question of whether or not to date a sighted or a blind person, as I have in the past. Sometimes I thought it would be easier to date a blind person, someone who could understand the challenges blind people face on a daily basis. At other times I thought it would be easier to date a sighted person, someone who could alleviate some of the challenges that go along with blindness.

Then, when I was in a relationship with someone sighted, I would start to question why I was with this person and why he was with me. Was he with me because he liked to play the protector? Was he with me because he had low self-esteem and didn’t think he could get a sighted partner? Was I with him because it was nice to have someone to drive me places when I was in a hurry or read the paper when NFB-NEWSLINE® broke down? Was I with this person because I was afraid to be alone?

When I was in a relationship with a blind person, I found myself asking similar questions. Did we have anything in common besides our blindness? Was I in this relationship because I didn’t think a sighted person could accept me? If I stayed in this relationship, how would we manage as a blind couple?

People enter relationships for many reasons. Like everyone else, we as blind students sometimes enter into relationships for the wrong ones. However, we can make this possibility less likely by possessing self-confidence and good blindness skills. For example, I probably won’t get into a relationship of dependency with a sighted person if I have access to readers, have good Braille and cane travel skills, and thoroughly know the city bus schedule. Likewise, I won’t be likely to enter into a relationship of safety with a blind person if I have the self-confidence to be blind on my own.

In other words, as in any relationship, you have to be happy with yourself before you can make another person happy. The better your blindness skills, the less your blindness will become an issue in a relationship. Both sighted and blind persons will respect you more if you are capable and self-confident. And isn’t that what Dr. Jernigan, Dr. Maurer, and our other mentors in the National Federation of the Blind have been telling us for years? It is respectable to be blind. If you keep repeating this to yourself, you will start to believe it. If you believe it, you will begin to live it. Living that truth will positively affect your relationships with both sighted and blind people.

It is important for all of us as blind individuals to analyze our relationships. I’m not saying you have to get out a microscope and examine each and every move you and your partner make, but you should ask yourself the following questions:
1. Would I still be interested in this person if the status of his/her sight changed? In other words, if you are dating a sighted person, would you still be interested if he/she went blind? Or, if you are dating a blind person, would you be interested if he/she got his/her sight back?
2. Would I still want to be with this person if all of a sudden I could see?
If you are currently in a relationship and answer “no” to either of these questions, you might want to get out that microscope and take a closer look. You might be in the relationship for the wrong reasons. If you answered “yes” to both questions, then you have made it to the Number One advantage of dating a sighted or a blind person, which is the same for both.
1. Dating this person, sighted or blind, means being with the one you love (or at least the one you like a heck of a lot). And isn’t that what really matters?