#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.

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

Respectfully Connected: The Lady on the Plane [Repost]

“I’m hopeful that maybe that woman slept a little bit more soundly, more restfully than she has in many years. Because she now knows that her grandson is exactly who he is supposed to be, and that it isn’t anyone’s fault, but just life as it is meant to be.”

I fly alone at least twice each year. Sometimes I focus on my music or my laptop during those flights. Other times, I strike up conversations with seatmates. Usually these conversations are brief and inconsequential. But as this post reveals, sometimes a chance conversation with a stranger on a plane can change that person’s life.

Even in todays “information age,” misinformation about disabilities abounds. In fact, the ready availability of answers with a single Google search allows misinformation to spread without its credibility being questioned. Much of the misinformation about disabilities surrounds their causes, fueling the centuries-old notion that family members are to be blamed for a child’s disability. Sometimes, the best people to correct such myths are those of us who live with disabilities and see them as a natural part of the human condition.

The author of this week’s post, Morénick, is an autistic woman in a multicultural, neurodiverse, serodifferent family of color. She describes a chance conversation on a plane, where she assured her seatmate that immunizations didn’t cause her grandson’s autism, but more than that, that her grandson is OK as he is. By briefly presenting correct information and the wisdom of lived experience, she interrupted a cycle of guilt and fear that was based on misinformation.

Sometimes I feel discouraged when I look at the depth of ableism around us, and wonder what I, just one person, can do. Perhaps the answer is in those chance meetings that pop up when we are just out living our lives. We never know how much a stranger might need our wisdom.

The Lady on the Plane

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/

Oh, Gnats!

In May 2010, a young couple welcomed the birth of their first baby girl. As Mom prepared to nurse baby for the first time, she struggled to position baby correctly on her breast. For a moment, her breast blocked baby’s nose, and baby began to turn blue. Mom called her nurse, who helped reposition baby, assuring Mom that it’s common for new mothers to need a little help getting the hang of nursing, and all was well.

But a few hours later, a social worker was contacted. Concerns were raised about the parents’ abilities to care for a newborn. Two days after her birth, baby was placed in a foster home, where she would stay until she was nearly two months old.

Why would a brief nursing mishap lead to the removal of a newborn from her parents? Especially when Mom was responsible enough to ask for help?

Because, you guessed it-Mom and Dad are both blind.

When the social worker first arrived, she bombarded the new parents with questions about how they would feed, change, transport and care for an infant. Mom and Dad, despite sure exhaustion from the birth process, answered the questions capably. Even so, the social worker ultimately stated that “I just can’t, in good conscience, send this baby home with two people who are blind.” For the next 57 days, Mom and Dad could only visit their newborn baby three times per week. Baby missed out on her mother’s milk, while her parents missed the feel of her first snuggles and the sound of her first giggles.
Click here to read more about this case

This story of Erica Johnson, Blake Sinnett, and their daughter Mikaela rocked the blind advocate community, especially the young adults like me. But thousands of disabled parents have their own stories, variations on this similar theme. Their disability becomes tied up in questions about their fitness as parents, and once the child welfare system becomes involved, proving their fitness can be an uphill battle. And the threat doesn’t end once parents take their newborns home from the hospital; well-meaning neighbors, strangers on a bus, even relatives may call the child welfare agency in at any time. The Americans with Disabilities Act (ADA) protects disabled parents’ rights, but many states still have outdated child welfare laws allowing social services to consider a parent’s disability as an automatic strike against their parental fitness. The consequences of this presumption can be tragic for families. Baby Mikaela got to come home to her parents, but too many cases end in the termination of the disabled parent’s rights.
According to a National Council on Disability report, disabled parents may be more than three times as likely as nondisabled parents to have their parental rights terminated. The removal of children from disabled parents is perhaps one of the most serious instances in which good intentions, combined with a fundamental misunderstanding of disability, lead to grave harm for both the parents and their children.

Below is a personal essay from Jo Pinto, a novelist and mom to a 9-year-old girl. Jo is blind. From her writings on parenting, it is clear that she is a good, responsible, involved mom. Yet she recounts the continual fear of child welfare’s involvement in her family life, and how an innocent misfortune like some gnats in her daughter’s lunchbox can trigger a cascade of worry. Yet she persists and prevails with confidence. This is what she says:

Oh, Gnats!

My nine-year-old daughter Sarah burst through the front door and shoved her soft-sided lunchbox into my lap full force, right on top of the braille book I was proofreading. “Mom! Bugs flew out at me! I opened the zipper, and a cloud of bugs just poofed out at me!”

“What? Wait, what?” I set aside my work, took the lunchbox, and like any respectable mom, shifted immediately into sleuth mode. “Start from the beginning. Bugs flew out of your lunchbox? What did the bugs look like? What did you do?”

“Tiny black bugs. They were disgusting. I screamed—eeeww! Then my friend Lily saw them and she screamed, and this boy Darien saw them and he screamed, too. The lunch lady ran over, and she thought the bugs were gross. so she got the custodian to clean out my lunchbox. And I didn’t want to eat the food, so I got another lunch.”

I kept calm on the outside, but I felt a familiar terror gripping my heart, mercilessly, like a cruel, crushing hand. The hand let go of my heart as my thoughts whirled; then it slid upward to my throat, digging viciously into my windpipe, cutting off my breath.

Who else had seen those bugs fly out of my daughter’s lunchbox? Surely everybody had noticed, especially since Sarah had been such a drama queen about it. What if the custodian or the cafeteria supervisor decided Sarah’s blind mom couldn’t keep a clean kitchen, since she sent her little girl to school with bugs in her lunchbox? I was almost sure the bugs were harmless. They were probably just common house gnats, but still. EEEWW!

“I’m sorry about the bugs.” I forced myself to speak calmly, although I was fighting like mad to keep from hyperventilating. “That must have been embarrassing. But gnats are harmless. They’re just annoying little critters that eat fruit. They probably stowed away on the pineapple or the bananas we bought last night. I’ll make sure your lunchbox is nice and clean for tomorrow.”

I washed the lunchbox out with antibacterial soap, and when Sarah’s dad came home from work that night, he flushed the kitchen and bathroom drains out with vinegar and hot water, just in case.

“Drink up, boys!” he said cheerfully. “That should take care of the gnats for a while.”

But it would take a lot more than vinegar and water to wash my fears away. Blind parents are three to four times more likely to be referred to Child Protective Services (CPS) than their sighted peers are. I couldn’t keep from wondering if the gnats in Sarah’s lunchbox would be the next issue that prompted some well-meaning school official to pick up the phone.

The first time I had to face down CPS, someone had called me in because I had a “big black mean-looking dog”—and you never know, a dog might harm a crawling baby if her mom couldn’t keep watch on the situation every moment. Ballad, my second guide dog, would never have hurt a fly. Sarah used to sit on her head now and then, and Ballad would hardly wake up from her nap to shrug off the annoyance. The case was closed, unfounded.

The second time a social worker and a police officer appeared on my porch, I had brought home some groceries on a sweltering summer day. I was trying to unlock my front door, juggling a guide dog, a cranky toddler, a heavy backpack, a sack of canned goods, and a gallon of milk. Something had to go. What went was the gallon of milk, which was the reason I had gone to the store in the first place. Splat! All over the front porch. I cursed. My daughter cried. The dog began lapping up the milk, which ran like a river over my feet and down the porch steps. I dropped the bag of canned goods in the puddle. It was my turn to cry as I rushed into the house. An hour later, I had a police officer and a social worker on my still milky doorstep, informing me that an anonymous caller said “the blind lady wasn’t coping well.” I told them I would have coped a whole lot better if the anonymous caller had come to my aid, mop and bucket in hand, maybe with a listening ear besides, instead of calling the social workers and the police. The case was closed, unfounded.

Next, a nosy neighbor had threatened to call CPS because I regularly took my little girl to the swimming pool by myself at the condo complex where we lived.

“Some of the other moms and I, we’ve been talking,” she told me. “We think it’s dangerous for you and Sarah to be at the pool alone.”

Instead of asking her why she and the other moms didn’t come hang out with us at the pool—which, in hindsight, might have been a really good question—I assured her that my daughter had worn flotation devices since infancy, that I’d been a competitive swimmer in high school and was competent in the water, that I stayed right next to Sarah as she swam and kept in verbal and physical touch with her at all times, and that I wasn’t about to let the fears of the neighborhood moms limit my little girl by keeping her home from the pool I helped pay for with my HOA dues. I believed that learning to swim, at least enough to save herself from drowning, was not only a great opportunity for my daughter but also an important precaution I needed to take for her safety. So if the neighborhood moms felt the need to call CPS, they could do what they had to do and I’d take on that battle when it landed in my lap. I never heard another word about it.

Nevertheless, as a blind mom, the nagging worry about CPS lurks constantly in the back of my mind. When my daughter gets a new teacher at school or joins a different Sunday school class at church, I feel happy for the opportunity. Then she inevitably does something goofy—and perfectly normal—like wear a raggedy old jacket that’s two sizes too small. You know, the kind of jacket you thought you threw in the box of cleaning rags under the kitchen sink. And the worry in the back of my mind flares up into a hot flame of fear. What if the new teacher thinks I can’t dress my daughter properly? What if she decides to make the dreaded phone call? Fortunately, the teacher laughs off the incident when I explain that my kid has a very unconventional fashion sense and that she’s a hoarder in training. and the flame of fear dies down to a nagging worry once again—till next time.

Thankfully, the gnats disappeared easily from my kitchen, and nobody from the school made a big deal about them. But raising kids in a fishbowl is a sad reality for disabled moms in our society. We have set incredibly narrow standards of what motherhood should look like. When people see moms who deviate from those standards, suspicion and judgment tend to be their first reactions. Most people soften their views with familiarity and education, but blind moms and those with other disabilities unfortunately get used to parenting under pressure as their children grow up and navigate the normal scrapes and scuffles of life. The good news is, I’ve found that most of the issues my daughter and I face are no different than the ones sighted parents and their children deal with every day. I know I’m a good mom, so in spite of the nagging worry about CPS that lingers in my mind and flares up into full-blown fear now and then, I have the confidence as a parent to face down any obstacles that come my way. Be they gnats or nosy neighbors or unknown trials of the future, I’ll prevail against them one by one.
[Reprinted from Blind Motherhood]
Click here to read about blind parents raising their children