“Wait, so I’m like them? Awesome!”

They’d been going to the Buddy Walk for years, she said. They’d participated in conferences, and had been active in the Down Syndrome community. But even while they spent time with lots of other folks with Down Syndrome, they’d never really said out loud to Jessie that she had it too.
When they finally told her, her mom said, her response was, “Wait, so I’m like [this person we know] and [that person we know]???”
Her mom affirmed that yes, she was indeed just like them. And Jessie said, “AWESOME!”
I’ve been asked a thousand times how to tell our kids about their disabilities. This is how.

I normally don’t share posts from nondisabled parents of disabled children on my blog. I try hard to center the voices of disabled people that are too often drowned out by the voices of professed allies. However, I’m going to make an exception for Diary of a Mom, one of the most enlightened parent blogs I’ve seen. The writer has two daughters, one of whom is autistic, and describes herself as an intersectional advocate. Her posts reflect a humble understanding of what a healthy disability identity is, and what her role is as a parent and an ally.

Parents often wonder how to break it to their children that they have a disability. They may anticipate a variety of negative reactions to the news, or they may worry about their own emotions getting in the way of how they frame disability to their children. As this post illustrates, when parents expose their kids to positive role models early and often, the conversation can be a strong disability identity in the making.

To learn more from the perspective of a great parent ally, I encourage you to browse some of Diary’s other posts after you read this one.

Read Diary’s post here

Blind in the City: Some Straight Talk About Eye Pressing

When I went to the Louisiana Center for the Blind, there were two other young adult students who had the same eye condition as me: Leber’s Congenital Amaurosis or LCA. The three of us became friends, and would joke about being part of an exclusive “club.”

During one of our class discussions, one of the guys with LCA mentioned that he used to press on his eyes when he was a baby. This caught my attention. Eye pressing (also known as eye poking or, in clinical terms, the oculo-digital reflex) involves pressing one’s fingers, knuckles or fist against one’s eye. It’s a common topic of discussion among parents of blind babies and children, particularly those with LCA and related retinal conditions. Appearing early in infancy, eye pressing may be one of the first hints that a baby is blind, as it was in my own case.

After my friend mentioned eye pressing, another student mumbled something like “Hey, I bet he still presses on his eyes.” My friend got quiet, and the subject was quickly changed.

Later I told my friend that I admired his courage for mentioning eye pressing in the class. All too often, blind children grow up internalizing shame about their eye pressing. The behavior alarms and vexes sighted parents, who don’t understand it, and they worry that their children’s eyes will be irreparably damaged, or that the pressing will make their child look more “blind.” Sometimes even the most well-meaning, gentle attempts to break us of the habit can teach us that there is something wrong with us. And, at least, many of us wouldn’t publicly admit to doing it.

My friend’s response was to say, “You know, sometimes when I get really tired, I still do it.” I admitted I hadn’t completely broken the habit either. Then he chuckled and added, “And I’ll bet you anything that [third friend] does it too. But he would never ever admit it.”

For many (though not all) people with certain retinal conditions, eye pressing is a lifelong habit, though we can learn to control it over time. I am told I started pressing before I was 6 months old. As an adult I can control it fairly well in public or when my hands are occupied. I still catch myself and move my hand away from my eye about a dozen times a day on a typical day.

I get so many questions from parents about eye pressing that I want to share some information here about what it is, why we do it, what the consequences are (and aren’t), and how parents and their children can address it in a balanced way. My primary goal here is to take the stigma out of eye pressing, and to offer some insider information based on my own experience and that of others shared with me over the years.

Q: Why do people press on their eyes? It looks painful!
A: Some people think that we press on our eyes to stimulate vision. While that may work for sighted people with intact retinas, I have yet to hear from any blind person who reports seeing lights, colors or other desired visual effects from eye pressing. The most common explanation I hear (which matches my own experience) is that pressure on the eyes simply feels good. Some people have learned to get the same sensation of eye pressing from pressing on their eyebrows, the bridge of their nose, or squinting their eyes tightly shut. Many of us who eye-press also have involuntary eye movements (nystagmus) as part of our eye condition, so I have wondered if eye pressing may simply be a way of settling our eyes down.

Eye pressing is often lumped in with other self-stimulatory behaviors or “stims” like rocking or hand flapping. However, unlike these other stims, eye pressing tends to be a “low-arousal” activity. Nap time or car seat time are prime pressing times for many babies and toddlers. I sometimes press in my sleep, and often when I am awake but tired, or lost in thought. Although anxiety can also be a trigger, this may simply be a sign of lapsing self-control under stress.

Q: Will my child develop permanent damage from eye pressing?
A: This question is hard to answer definitively, because people who eye-press also have lifelong eye diseases. So, when a person develops changes to their eye shape or complications like glaucoma, it is impossible to tell if the problem is caused by the underlying eye disease, eye pressing, or both. It is difficult to find comparison groups of people with the exact same eye physiology who do vs. don’t have a history of eye pressing.

Certainly, some children who eye-press develop sunken eyes, keratoconus (a change in corneal shape over time), or eye infections. Others have none of these issues. It is not clear how much of this is caused by eye pressing itself, but reducing the frequency of eye pressing will reduce the odds of causing lasting eye changes. Any effects are cumulative, so occasional pressing is safer than constantly doing it.

I developed keratoconus as a teen and now am prone to dry eyes. When I have been pressing for a long time, my eye becomes a little sore and irritated. This is my main incentive to curtail the habit in my adult life.

Q: How do I get my child to stop eye-pressing?
A: To unpack this question, let’s consider the nature of the eye-pressing habit, the reasons why controlling it may be desirable, and some ways to balance a desire for control with the need to respect the person’s neurology.

Eye-pressing has been described as a reflex. It appears very early in life, and as such, is an innate habit. That said, it is controllable. Many people report that once they become aware of the habit, they are able to control it to varying extents. However, for most of us, it takes some effort to control, hence why we may press more when we are tired, ill or stressed. Some people can extinguish it completely, usually by working hard and often getting intensive support at first from another person to make them aware of the habit.

Controlling the frequency of eye-pressing may help promote eye health. There is also the social aspect, that sighted people don’t press on their eyes, and so the behavior can create a negative social impression on others.

I do think it is a good idea to make children aware of the negative aspects of eye pressing, in age-appropriate ways. This awareness will help equip them to develop self-control as they get older. For very young children, keeping their hands engaged or using glasses as a barrier can reduce the frequency, but probably won’t extinguish it completely. (Remember naptime). For older children, It is possible to explain in a matter-of-fact, nonshaming way that eye-pressing looks off-putting to sighted people and could change the shape of their eyes over time.

Some parents and educators swear by behavior modification strategies to stop kids from eye-pressing. Common strategies include using code words to alert a child that they are pressing, or developing rewards for periods of control. Such strategies do work, but only up to a point, because they rely on adult intervention. When an adult isn’t monitoring their behavior, a child can simply go back to eye-pressing. To have meaningful control, the person needs to self-monitor in the absence of external cues. Usually, this happens when someone decides they want to reduce or stop their eye-pressing because they want to, not because an authority figure is “making” them stop.

Generally, I advise parents to try reminders or rewards as a way of promoting self-awareness, in a way that fits their family style and their child’s personality. But, parents must also understand that the underlying urge to eye-press doesn’t go away, and that realistically, their child may continue to eye-press at least occasionally. It is important not to restrain, punish, or shame a child for eye-pressing. Unfortunately, I have heard of children having their hands restrained, or being made to write essays on eye-pressing as a means of punishment. Such strategies are not only harmful, but they fail to address the reflexive nature of the behavior. Rather, children can accept that eye-pressing is part of their neurology, and still learn to control it when doing so is advantageous for them.

RISE-ing Up and Changing Lives in Northern Virginia

A few months ago, I blogged about my career journey
And my recent half-time contract working with the National Federation of the Blind of Virginia on our Project RISE youth transition program. I haven’t written much on the program here, partly since I try to keep the Weekly Wisdom blog content relevant to a national or international readership, and also to protect the privacy of individual students. However, since our program recruitment is in full swing right now, I wanted to take this chance to share a bit about what we’ve done, get the word out about our future plans, and perhaps inspire others to consider developing similar programs. (Plus, this is my professional blog, and Project RISE is a big part of my professional life at the moment).

This past spring and summer, we served 18 students ages 14-21 who are blind or visually impaired and live in northern Virginia. During monthly interactive group sessions, our students explored careers, wrote resumes and cover letters, practiced professional interaction, and learned nonvisual skills for independent living and travel. We also had a lot of fun! Students learned from each other and from our dedicated blind mentors who are all either working professionals or older college students.

This summer, I had the pleasure and challenge of coordinating work experiences for nine of our students. These included competitive summer jobs, volunteering, or internships geared toward specific vocational goals. We had a student intern in a medical research lab, another at a commercial bakery, and a law firm. A fourth student had a music internship tailored specifically for him, and I will get to see him perform his original music tomorrow evening. It was challenging to find positions for students spread out across a fairly wide geographic area and with a variety of specific vocational interests. But the reward for the students, for us, and for the employer partners has been well worth it.

Since the program started in February, the growth we have seen in individual students is striking. I’ve observed shy students who barely said two words to anyone at the first session, going up on stage to debate with their peers and reaching out to professional contacts on their own. Students with partial sight who voiced discomfort or disdain for their white canes at the beginning began willingly carrying them to our events. Older students modeling self-advocacy for younger students and honing their own leadership skills in the process. These gains may not be tangible at the moment, but they will undoubtedly translate into success at school, at work and in life.

As a pre-employment transition program, we have to provide a specific set of services under the Workforce Innovation and Opportunity Act. Our curriculum may seem complicated, but when I think about what makes our program so impactful, the most important active component, in my mind, is something that is barely mentioned in the regulations. Yet it is something that resonates with my own past. The summer after 7th grade, I recall going to a day camp for nondisabled teens, coming home one night, and bursting into tears. Such melodramatics are very rare for me, and in fact, that was the last time I have ever seriously cried. It was a reaction to years of accumulated microaggressions and the sense that I didn’t belong among my peers, or even in the broader community where I knew few other disabled people. At that particular point, I had nowhere to go emotionally but up.
It was less than two weeks after that night when I first met
my blind best friend
And the tide began to turn. As I found a blind peer group, and later found blind mentors, I was reassured of my belonging. I stopped blaming my disability for frustrations in my life. And I gained the confidence to move beyond my comfort zone.

The community we have established in Project RISE is, in my view, directly responsible for the incredible gains we have seen. Many of our students may be the only blind or disabled person in their family, their school, or their local area. Some have grown up with the daily microaggressions of ableism. Others are losing vision and wondering if their dreams must be deferred. Through our community, they are getting the support to relinquish misconceptions and to embrace their identities as blind people. They are learning that there is a place where they belong and that their dreams are possibilities. As evidence of our community’s strength, 13 of our 18 students will be returning this fall.

Spurred on by the success of our first term, Project RISE will be having another full year of monthly meetings in the northern Virginia area. We are also expanding to offer quarterly meetings and mentoring to blind and low-vision youth across the state of Virginia. To learn more, check out
the Project RISE website
and
follow us on Facebook!

“Everything in Nature Goes in Curves and Circles”: Native American Conceptions of Disability [Repost]

As Kim E. Nielson notes in A Disability History of the United States, Native American conceptions of disability are unique in that they don’t really exist. There is no language equivalent or even translatable concept for the word disabled, the closest translatable phrase is simply “being different.” … Native Americans do not prescribe to ideas of othering simply because there can be no other in their concepts of reality. Nature is constantly changing so “normalcy is an ever changing process of coming to balance.” Disability is therefore seen as a difference that can be integrated into society. Disability is “only an element of the individual’s existence, not the defining element.”

This week my husband and I are celebrating our five-year anniversary on the beach boardwalk in Ocean City, MD! You can find me listening to my copy of Kim Nielson’s A Disability History of the United States.
Here’s an interesting essay introducing how disabilities are conceptualized in Native American culture.

“Everything in Nature Goes in Curves and Circles”: Native American Conceptions of Disability

How to Quit the Disability Blame Game

In centuries past, disabilities were often blamed on supernatural beings. It was thought that a child’s disability was bestowed as punishment for the parent’s sins, that an adult’s disability was punishment for their own sins, or that deities used disability as a way to test one’s faith.

In the 21st century, such theories have fallen out of favor in the western world. However, the tendency to blame someone or something for disability is stronger than ever. Too often, parents blame themselves for their child’s disability: They blame themselves for contributing “bad” genes (even if they didn’t know they carried such genes); and mothers may blame themselves for pregnancy or birth complications that led to a child’s disability. Tragically, such self-blaming is often reinforced by the reactions of others, fixating on what caused a child’s disability, sometimes implying or even stating that a mother must have “done something” to cause it. Other groups of people blame disabilities on environmental agents: “anti-vaxers” blame vaccines for autism; childhood learning or behavioral impairments may be blamed on omnipresent substances like gluten, food additives, or airborne toxins. And, when adults develop chronic health conditions or disabilities, they are sometimes blamed by others for becoming disabled through poor health choices, or for not doing enough to manage their own impairments.

Why are we, as a society, so obsessed with finding someone or something to blame for disability?

Blaming is actually an important aspect of human behavior. When we search for the cause of an event, we gain the ability to predict and control that event. As a species, our survival depends on how accurately we can control our environment to promote desirable phenomena and prevent undesirable phenomena. When disability is so often seen as an undesirable phenomenon, we can become driven toward finding its causes in order to control it.

Furthermore, disability blaming helps us manage our own fears of the unknown, the uncontrollable, the possibility that we may be touched by new disabilities at any moment. As long as we can pin disability on something someone else did, we can feel confident that the same thing will not happen to us or our children. Or, if we pin disability on something measurable and avoidable in the environment, like a vaccine, we can feel confident that as long as we or our children avoid that thing, disability will not touch us.

So, disability blaming can be functional. But it is also clearly harmful. Disability self-blaming creates emotional turmoil for parents, and can distract them from the important work of equipping their children with tools and self-confidence. Blaming others for their own disabilities leads to stigma and exclusion. And when disability is erroneously blamed on an environmental factor, such as autism being inaccurately blamed on vaccines, the consequences for society can be destructive. Vaccine avoidance harms not only the autistic community, but also those who are no longer protected by herd immunity. Or, families may fall victim to unproven quack theories about the origins of disability, when peddlers of such quacks take advantage of a parent’s need to predict and control disability in their child.

How do we walk away from the blame game?

We can start by examining what we do know about the causes of disabilities. Most disabilities are simply nobody’s fault. I will repeat this because it is so important: Most disabilities are nobody’s fault. Genetic disabilities appear when DNA randomly changes during the process of replication. This has been happening since the beginning of time. When a sperm and egg line up that happen to bear the same DNA mutation, or when one parent contributes a “dominant” genetic mutation, then a child is born with a new trait. Sometimes that trait is brown eyes instead of blue; other times, it’s a disability. Sometimes, acquired disability arises from an accident or illness; in most cases, this, too, is nobody’s fault. Occasionally a disability can truly be blamed on a specific individual (as in the case of disabilities caused by abuse or neglect). Even in those cases, though, focusing on blame for a deed that cannot be undone distracts us from moving forward and accepting the “new normal” of disability.

So, perhaps we need a better phrase in our language to capture the concept of “nobody’s fault.” Then, when we need to pin disability on something, we can simply pin it on “nobody’s fault.” But, that doesn’t completely solve the problem, because “nobody’s fault” is something we cannot predict or control. We need to find a way to overcome our fear of the uncertain and the uncontrollable. Anyone who knows me well will be surprised to see me giving this advice, because I’ve always struggled with uncertainty. It’s gotten easier as I’ve aged, but even today an unanswered email or an ambiguous conversation can fill me with anxiety. Heck, I’ve even previewed the ending of a book more than once because I just couldn’t stand the suspense of waiting another 20 chapters to find out what happens. In fact, I went into the field of psychology because I was so attracted to the idea of being able to predict and control human behavior through science, and to get reasonable clarity on the causes of puzzling human actions.

But, in order to relinquish our obsession with blame and accept disability as a natural part of the human condition, we must find a way to accept the uncertainty and unpredictability of human difference. The fact is that disability can touch any of us at any time. When it comes, it can bring some unwanted consequences. But ability differences also enrich the diversity of our species. Disabilities can lead to unexpected discoveries and connections. We may not be able to control the arrival of disability, but we can control our response to it. If we can learn to embrace the chaos of disability, or at least to tolerate it, perhaps we can find our way from blame to acceptance.
Related reading:
Let’s Not Play the Blame Game: Parenting, Disability and Social Stigma