Category: Solidarity2

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

Autism, disability etiquette, Solidarity2

Babysitting a nonspeaking four year old [Repost]

I recently stumbled on an excellent blog,
Realsocialskills.org.
In this Blog, Ruti Regan re-interprets the concept of “social skills” as a set of skills we can use to interact with one another in an ethical, respectful manner.

In the post below, Ruti responds to a reader question about how to interact appropriately with a nonspeaking child. The suggestions offered can guide us toward respectful interaction with people of all ages who communicate differently than how we expect-whether through unusual speech, a different spoken language, sign, pictures, or a self-taught method. One of the most important points Ruti makes is that all people have thoughts and feelings worth listening to. When we expect that the person has important things to communicate-and not just needs, but also wants and preferences-communication and mutual respect become much more attainable.
Babysitting a nonspeaking four year old

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.

disability etiquette, Solidarity2

a Girl Wreathed in Shadow [Repost]

“What does she want to order?”
“Can you sign him in?”
“Can you take her upstairs?”

On today’s blog post, Holly writes about how it feels to be talked over as a disabled person. All too often, if we choose to enter a place of business with a nondisabled person, staff will interact only with the nondisabled companion, sometimes quite explicitly ignoring our voices with questions like “What will she have to eat?” Of course, besides being an ineffective mode of communication (my friend can’t read my mind), such maneuvers are dehumanizing and disempowering for the disabled person.
Holly also brings up a related issue: the assumption that nondisabled companions can automatically serve as scribes, interpreters or in other access roles. For example, the clerk who insists that my sighted spouse help me fill a printed form instead of taking my dictation (as they would do if I came in alone). Of course, at times our family members or friends are happy to help facilitate access, but it shouldn’t be assumed that they have an obligation to do this.
A Girl Wreathed in Shadow

ableism, Family, Guest post, Solidarity2

Four Tips for Crossing the Disabled Adult-Parent Divide [Guest Post]

When a nondisabled parent discovers that their child has a disability, they are thrust into a uniquely difficult position. They must learn to support and accept an aspect of their child’s experience that is usually unfamiliar to them. Despite the fact that up to one in five people has a disability, most nondisabled parents have not gotten the kind of disability exposure needed to really understand and accept their child’s disability. As a result, many parents in this situation tell me they are overwhelmed, sad, devastated, terrified, or have other intense negative reactions to a disability diagnosis for their child.

An increasing number of parent support groups have emerged on social media for parents of disabled kids. This is, overall, a very positive thing that allows parents to share experiences and advice with other parents. Disabled adults frequently join these groups to share their own childhood experiences and advice with parents. This, too, is perceived as a helpful thing by many parents. Disabled adults can offer the kind of cultural awareness and knowledge based on lived experience which parents rarely get in the wider world before they have a disabled child.

However, as this week’s guest post points out, sometimes tensions can arise in online groups between nondisabled parents and disabled adults (with disabled parents often ignored altogether). As in any online environment, tactless and disrespectful comments on either side can destroy an otherwise supportive climate. But there are also intergroup dynamics that may arise in these groups which mirror the historical ableism patterns that disabled people have experienced for centuries. Parents new to the disability community may not recognize these patterns. The intent of this guest post is to help parent groups build policies that allow parents to fully benefit from the support of disabled adult members.

Four Tips for Crossing the Disabled Adult/Parent Divide
By Tasha Chemel

In the disability community, there tends to be an artificially imposed divide between parents of disabled children and disabled adults. This divide can become magnified in online support groups where miscommunications abound and the tone and intent of posts can easily be misinterpreted by both sides. The good news is that I strongly believe that this divide is far from inevitable. Based on my own experience as a blind adult member of two groups for parents of blind and visually impaired children, I offer four tips for how parents and disabled adults can work together to create parent groups that are conducive to dialog and collaboration.

1. Mixed messages.
As disabled adults, we sometimes receive confusing and mixed messages about the nature of our role in parent groups. It often seems that though we are permitted to give tangible and concrete advice about finding the best screenreader/laptop/¬cane/wheelchair, etc., our efforts to reframe parents’ questions are not always appreciated. For example, a parent might ask about the best way to get a road sign installed stating that a blind child lives in their neighborhood, whereas a blind adult might point out that this kind of sign might be stigmatizing for the blind child. Some parents get upset when such reframes occur, and this is partly because they were not asking for a reframe in the first place. I think the ground rules have to be clarified here: if the parent group as a whole doesn’t want to allow these reframes, then this has to be made explicit. Disabled people will have to decide whether they are all right with having a conditional role in the group.

2. Safe Spaces
When a child is newly diagnosed, fighting ableism on a systemic level is the last thing most parents are thinking about. Many parents are struggling to simply get through each day. For this reason, it’s not surprising that they need a place to grieve and vent. When disabled adults join parent support groups, it should be with the understanding that parents are at different places on their journeys, and that some interactions might be very helpful for parents but are not necessarily healthy for us to witness. Sometimes we might have to step back from the group as a result. At the same time, there is a difference between a parent who expresses grief and a parent who makes sweeping generalizations about all disabled people and acts defensively when a disabled adult attempts to educate them. Disabled adults should feel free to seek out admins in these types of situations, without being afraid that the admin will use parents’ need for a safe space to shut down any mention of ableism. In addition, the group should decide whether it will allow public call-outs.

3. You’re not a parent.
A common response I receive when posting to blind parent groups is that I am not a parent so my comment is not valid. This is true. I can’t speak to what it’s like to parent a blind child. I can, however, speak to the lived experience of being one. This is a valuable perspective for parents, since disabled children become disabled adults. As a disabled adult, I’m uniquely qualified to talk about how my parents’ decisions have affected me. When disabled adults post to parent groups, they do have to keep in mind that there are aspects of a situation they might not be thinking of. For example, if a disabled adult suggests that a parent take time to do something for his or her child that is very labor-intensive, they are not considering that the parent might have other demands on their time, such as additional siblings or work responsibilities. At the same time, parents shouldn’t dismiss comments made by childless disabled adult’s simply because they are not parents. They also shouldn’t automatically assume that a disabled group member is not a parent, or that a parent member is not disabled. Disabled people can and do parent disabled children, and the assumption that all disabled people are nonparents is rooted in unintentional ableism.

4. Silencing of Disabled Adults.
Finally, disabled adults have historically been silenced or spoken over by parents and professionals. When a post written by a disabled adult gets deleted, it sends a message that the adult’s perspective is not important or not welcome. If a post gets really out of hand, freezing it, rather than deleting it, will usually solve the problem. IF a parent group has collectively decided that it wants disabled adults to be valued members of the community, then the group must do its best to ensure that the deeply entrenched patterns of silencing of disabled people are not replicated.
Tasha Chemel is a blind writer, teacher and potter. She has master’s degrees in social work and education from Boston College and the Harvard Graduate School of Education. Currently, she is a writing tutor at two universities and is also completing an internship in academic advising. her essays and creative work has appeared in Wordgathering, Getting Along with Grief, Breath and Shadow, and the anthology Barriers and Belonging. Find her on LinkedIn at https://-www.linkedin.com/in/¬tasha-chemel-bab8556/