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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

Autism, Past, Present, and Future, Solidarity, The coming generation

On Being a Disabled Introvert and the Follies of Social Skills Training

In my earliest childhood memory, I am standing in a room that is not in my home. I remember hearing the words “San Diego,” one of my parents handing me a piece of banana and then walking away. I was likely younger than 2 at this point. I remember the words “San Diego,” the taste of the banana, but most of all, what I remember was the sense of peace I felt standing alone for just a moment, with nobody talking to me, touching me, or trying to engage my attention. My parent was near, but I was alone in my little space, and it felt glorious.

Several of my favorite other early-childhood memories involve the joy and peace I felt spending hours in my bedroom listening to music, lying quietly with my thoughts, and when I got old enough, reading. I am told that in my toddlerhood, when I heard the doorbell ring or discovered that someone was visiting our home, I would head off to the quiet of my bedroom. This behavior deeply concerned my teachers at the local blindness agency where I received early intervention services. They were worried about my socioemotional development. But in relaying this story, my dad-a smart, funny, loving man who just happens to be an introvert-told me he understood

When nondisabled children prefer quiet activities or have quirky interests, they might be considered a little odd or unusual, and adults might make a few attempts to encourage them to be more social, but usually it’s accepted that this is part of who they are. In contrast, when disabled children display any kind of social behavior that deviates from the developmental charts, alarm bells sound, and often an entire team of adults swoops in to try to save these children from social isolation. As my fellow blind blogger, Meagan Howell, writes (full post is linked at the end):

…my introversion seemed to be a source of ongoing anxiety for the adults in my life. Daycare workers, teachers, consultants, and all manner of others concerned themselves with my social development, no doubt worried that a disabled child left to her own devices would morph into a stunted mess. Their fears weren’t entirely unfounded, and my isolation did facilitate certain quirks it took me a bit too long to eliminate, but my intelligence, contentment, and overall growth didn’t feel impeded by my apparently-tragic lack of friends. At least, that’s how I tend to view it. Frequently labeled antisocial and stubborn, I noticed that my personal preferences were considered partially or wholly irrelevant. This is true for many children, I think, especially when they grow up surrounded by people who fear they’ll turn out wrong, somehow. I don’t know that any adult stopped to consider that maybe, just maybe, Meagan was at peace with not having many friends, and that she’d make them when she was ready.

Most disabilities are perceived as social liabilities, and this perception has a kernel of truth-disabled people of all ages are more likely to encounter abuse, bullying, and exclusion than their nondisabled peers. In addition, certain disabilities can change the ways in which children develop social skills. For example, children with sensory disabilities may not be able to directly observe all aspects of other people’s social behavior. And, one common feature of autism (according to autistic self-advocates) is “difficulties in understanding or expressing typical social interaction.”

While it is true that disabilities can alter the process of social development, prevailing beliefs about how to intervene are often based on problematic assumptions. Social “deficits” are often expected in disabled children, and the popular solution for these “deficits” involves top-down instruction from nondisabled educators. “Social skills training” is considered a part of the “Expanded Core Curriculum” in instruction of blind children, and is popularized in the education of autistic children as well. All too often, well-intentioned social skills programs for disabled children continue to perpetuate long-lived power imbalances and societal prejudices. For example, when rooted in a culture that values extroversion, social skills programs may ignore and devalue the needs of introverts like myself and Meagan. More insidious, “social skills training” is often code for “compliance training,” where the hidden curriculum involves teaching a disabled child to comply with nondisabled norms in order to be accepted. Rather than instilling competence, confidence and well-being, inherently compliance-based instructional approaches can instead instill shame, insecurity, or self-loathing, as children may feel compelled to censor a part of themselves in order to be accepted by others.

So then, is there a better way?

In parent support groups, parents of disabled children sometimes voice concerns about their kids preferring to interact only with adults, or to play by themselves for hours with a single object, instead of interacting with their peers. I tell these parents that traditional children’s play activities are often rife with accessibility barriers. Solitary activities, that a child invents and directs, are fully accessible by design. I remind parents that adult interaction partners tend to be more predictable and more accommodating of access needs than other young children. Thus, a disabled child’s “socially inappropriate” behaviors may be highly adaptive. Furthermore, for autistic people (of all ages), “special interests” may serve as a primal source of joy. It is fascinating that the same deep, passionate focus derided in the autism intervention world as “perseverative” or “obsessive” is rewarded in the academic world with grants and tenure. As Julia Bascom, executive director of the Autistic Self-Advocacy Network, writes (full post is linked at the end):

This is about the obsessive joy of autism. So I guess, if I’m trying to explain what an obsession (and, by necessity, obsessive joy) means to me as an autistic person, I can bring it back to the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. All too often this encounter is viewed through the terrified eyes of the unwillingly captive audience. I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

There are several things we can do to support disabled children’s social development. We can begin by understanding that social connection means something different to every individual, and instead of following a one-size-fits-all curriculum, we can try to understand and support a particular child’s social goals, knowing that these might change throughout the child’s life. We can follow the child’s lead in identifying playgroups and other natural friend-making opportunities based around their interests. We can work to ensure that play settings are fully accessible and that there is a choice of activities. We can introduce disabled children to a variety of role models, both disabled and not, who can demonstrate the social skills that really matter for healthy relationships: things like sharing, empathy, and trust. We can provide guidance beforehand, and feedback after, a challenging social situation. We can support the child’s natural social learning process so they can develop the connections that matter most to them, while accepting them for who they are.

As for me, my interest in relationships (both platonic and romantic) kicked up a few notches when I hit puberty. Today I am happily married, have a small group of great friends, have good relationships with my family, and feel comfortable teaching and leading others. What I learned about socialization didn’t come from blindness professionals or from a book. I did what the blindness professionals said I couldn’t do: I learned by observation. As a quiet person, I learned by listening to others interact, and adopting the social behaviors that fit me and my personality. At my core, I’m still an introvert, and I’m OK with that.

Advocacy, DeafBlindness, Guest post, Solidarity

I can’t hear the whispers? Breaking down the barriers of Deafblindness [Guest Post]

This week’s guest post comes from Marsha Drenth. Marsha is the manager of Pennsylvania’s DeafBlind Living Well Services program (DBLWS) through the Center for Independent Living of Central Pennsylvania (CILCP). Deafblindness has been Marsha’s passion since losing her vision in 2004 and beginning to lose her hearing in 2007. Now totally blind and profoundly hard-of-hearing, Marsha uses numerous methods of communication, including Tactual Signed English, Bluetooth-enabled hearing aids, and numerous other technologies to live independently. In addition to her fulltime job as a statewide program manager, Marsha is highly involved in the deafblind, hard of hearing and blind communities both in Pennsylvania and around the country.

In addition to serving and helping persons who have disabilities, Marsha is also a wife, a mother of three adult children, and a graduate of Temple University, where she earned her Social Work degree. She lives north of Philadelphia with her husband, Joseph, and her service animal. She is passionate about empowering persons who are deafblind, hard-of-hearing, deaf, blind and disabled to receive the services they need for engaging their culture, becoming productive members of society, interacting with their environments, and expressing their own voice to influence their future.

I can’t hear the whispers? Breaking down the barriers of Deafblindness.

First, you’re probably asking what Deafblindness is. And how does it apply to me? First the medical version, for the purposes of this article, according to the Helen Keller National Center, Deafblindness is any combined hearing and vision loss that impacts a person’s ability to communicate effectively. This is the short definition, as I could get much more technical but won’t for now. It means that a person has both a vision and hearing loss, and the combination of both causes difficulty in communication, independent living, orientation and mobility, social interactions, education, and obtaining employment. In most cases, there are two different communities in which a DeafBlind person could originate from; the blind community and the deaf/hard of hearing communities. In other cases, some persons obtain both a hearing and vision loss over time or suddenly for various reasons. DeafBlind persons have a wide variety of hearing and vision loss, communication methods for expressive and receptive language, education, orientation and mobility, support systems, involvement, experiences, and exposure. The combination of hearing loss and vision loss can happen at any point in a person’s life and effects all races, ethnic backgrounds, educational levels, gender, income level, and any disability. So now to why does this effect the greater disability community? As blind persons use their hearing to navigate and understand the world; not supersonic hearing, not hearing better than others, but using that hearing in the best way possible. For example, when walking down the street, blind persons are able to hear buildings, doorways, trees, people walking by and traffic. As blind people, we are taught to listen for traffic to make sure that it’s safe to cross the street. As blind persons, we use our hearing to locate other people and objects within our environment. These are just a few examples of how persons who are blind use their hearing in the best way possible. Unfortunately, this is where I think the blind community has ignored and denied the DeafBlind community up until now. Blind persons cannot imagine losing their hearing. They think the world will be over if they do lose their hearing. Many times people will say, that will never be me, my hearing will always be good. And a million other reasons for ignoring the fact that they could lose their hearing at any point in their life. How do I know all of this, because I was once one of those blind persons who said those things! I am now DeafBlind. Yes, it can happen to anyone, at anytime, anywhere, for no reason.

Here is my story, in 2007, after being blind for several years at this point, I had begun to become lost in the most familiar environments in which I frequented on a daily basis. An O&M instructor friend suggested that I have my hearing tested. So I made the appointment, telling myself that I was just having a lot of issues lately and nothing was wrong. So I am sitting in the chair getting my hearing tested, and the audiologist comes in and says, yes you have a slight hearing loss. Of course my first reaction was that there is no way, not me. It was true, and I was fitted for hearing aids. I didn’t wear the aids, because I didn’t like the way they made me hear, or fit into my ears, and the fact that I was in pure denial. After being stubborn and in denial, I did begin to notice that I could not hear voices in loud places and I could no longer hear for the openings of doorways. Fast forward a bit, in 2011, my hearing took a sharp decline, not being able to hear people in the same room speaking loudly, understanding when a person was sitting next to me, hearing traffic, and using Jaws on my computer. Finally with much negative emotions I took those hearing aids out and began to wear them; although I still hated the idea, the reason for wearing the aids, how they felt, and how sound was distorted. Through 2011 to 2013, I went from a mild hearing loss to profoundly deaf. In the spring of 2012, I enrolled as a student at Temple University to finish my degree as a social worker. In the fall semester of 2012 and the spring semester of 2013, dealing with a major hearing loss and attending classes at a major university became overwhelming. I could no longer function with hearing aids and listening devices which increased my anxiety and stress; fearing that one day I would not hear traffic for example in the busy streets of Philadelphia.

During the summer of 2013, I was at a cross roads, knowing that going back to school would be much of the same, but also realizing that I no longer had the skills to function. So I made the very difficult decision to take a Leave of Absence from my education and attend the Helen Keller National Center for deafblind adults and Youth. HKNC is very similar to other centers, where you learn independent living skills, technology, orientation and mobility, and job readiness skills. The two areas in which HKNC is different from other centers, is that HKNC offers communication skills, like learning ASL or writing skills. The Orientation and mobility is targeted directly at teaching skills for DeafBlind persons to be independent. HKNC is a center in which other DeafBlind people attend for the same training, forcing everyone there to face the reality of hearing and vision loss. Looking back, being away from home, family, church and life was not exactly what I wanted to do, but spending the 10 months there was by far the best possible situation that could have happened for me.

Once I completed my training at HKNC, I re-enrolled at the University for my senior year. This last year of my undergrad career was going to be challenging as I now needed to use sign language interpreters to help with communication, to use Communication Access Realtime Translation (CART), and a Support Service Provider (SSP). Now instead of listening to Jaws, I needed to use my braille display to read my textbooks. For both the fall and spring semester, I took 17 credit hours, with an additional 200 hour a semester internship. In May of 2015, I graduated with my bachelors of social work degree. I am now employed as the Program Manager for the Pennsylvania Deafblind Living Well Services Support Service Provider Program.

I have summarized my story of hearing loss, not to make myself sound inspiring but to help people understand how hearing loss can effect a person and the different barriers faced when hearing loss becomes a factor. I am now wearing the most powerful hearing aids on the market, but still struggle to hear speech and environmental sounds. I am one of the many deafblind persons who has one foot in two different communities, I belong to the blind community and the deaf community. For large meetings, I use a tactual English interpreter. For one-on-one interactions in a quiet environment I can use a Bluetooth microphone system that feeds directly into my hearing aids. To cross the street I use a street crossing card that asks the public for the assistance to tell me when its safe. When I am out alone needing to communicate with people, I use communication cards. I am at this point able to verbally express myself. I no longer talk on the phone because the telephone distorts the sound of a person’s voice too much. I now use non-auditory non-visual techniques to prepare and cook meals. I continue to enjoy listening to music, but unless I have heard the song before I can not hear the lyrics. As before I still enjoy community, social, organization, religious events with help from others.

So here is where I come to my topic in a roundabout way. Support Service Providers for persons who are deafblind. An SSP is the ears and eyes for a person who has a dual sensory loss. SSP’s help with human guiding, facilitating communication and providing environmental information. An SSP is absolutely not a personal care attendant, a care taker, or a nurse; SSP’s do not help with personal grooming, bathing, toileting, feeding, or hygiene needs. SSP’s work with adults who can self-determine with their own finances, and other personal matters. SSP’s are trained specifically to facilitate, not to do for the person, but instead to empower. SSps are not interpreters, and vice versa. Interpreters help bridge the language barrier and are used for legal, medical, financial and educational needs. Sometimes interpreters can also be trained as SSP’s, but not all SSP’s know sign language. I have used SSP’s for personal, professional and educational needs. For example, for social events I will employ an SSP to help with providing environmental information, navigating the surroundings, and facilitating communication. As a student in my senior year, I used an SSP for my one-on-one case management social work intake visits. In this case, an SSP would help with environmental information of our surroundings and of the customer’s non-verbal communication. In an educational setting, I have used an SSP for giving presentations, to provide me with the nonverbal and verbal communication of my audience. As a blind person, I would have never imagined needing or wanting to use an SSP. Now an SSP is absolutely vital to how I function in life.

Only about 30 states in the United States have SSP programs where the SSP’s are paid trained individuals. As you would imagine, the deafblind population is very small. Here is where I would like to ask for your help. What I am asking is several things. Acceptance; we are DeafBlind, there is a National Federation of the Blind DeafBlind division. We might do things differently than you, or as other blind persons, or even differently than other persons with disabilities; but we, deafblind persons do them in a way that works for us. Independence is in the eye of the beholder, we deafblind persons achieve independence as much or more than blind persons. Our independence is no less or more than others. We do not expect that you will understand what it’s like, but we do desire to be a part of the greater community and accepted within the fold. If you meet someone who is not like you, who might be lost, who might need help, that person could have a hearing loss, have a cognitive disability, mental illness, or numerous other disabilities. That person is not asking for a hand out, but the help or assistance as everyone needs from time to time. Deafblind persons are asking for the collaboration of everyone. When legislation, policies, restrictions effect the blind or deaf community, those same things will affect the DeafBlind community too. In other words, not only are you paving the way for the blind, but for the DeafBlind, or the Deaf, and the disability community as a whole. We are asking that you don’t forget to fight for us too, as I am sure we will fight for you when the same situation would come along. But further, when legislation, policies, regulations come along that are very specific to the DeafBlind community, do not bash, tear down, hinder the efforts to change even if you do not understand. It is this greater understanding that as a deafblind person I have gained from losing my hearing. No, I don’t understand what it means to be a person with other disabilities; but their fight is my fight. They understand the struggles, I understand the struggles, and we all should work together. There is power in numbers, so please walk aside me as a deafblind person, walk aside all people with disabilities for our right to be equal.

Autism, Family, Solidarity

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

ableism, Advocacy, Solidarity

How Would We Know If We Overthrew the Mental Health System? (Repost)

I found the below article very thought-provoking. I don’t agree with all the ideas expressed in it, but I believe it gives us a lot to think about as inclusion advocates-not only regarding how we treat people with “mental health conditions” but also how we think about things like consent, competency, and who gets to define disability.

I don’t personally agree that psychiatry is a “pseudoscience” or that it should be entirely overthrown. In a limited number of cases, particularly ones in which an individual’s behavior threatens another’s safety, a brief hospital stay may be the only feasible solution. Similarly, I imagine there are individuals who are genuinely, subjectively suffering from their symptoms, and benefit from psychiatric interventions.

However, I am troubled by the diversity of human traits and tendencies that are classified under the DSM-V as symptoms of mental illness, and the clusters of traits and tendencies that are pathologized as mental illnesses. Sometimes, I try to imagine meeting a person who has absolutely none of the symptoms of any DSM-V diagnoses. This mythical person would be in constant emotional balance with never a hint of anxiety, depression, rage, or mania. They would never exhibit any impulsivity, hyperactivity, inattention, or apathy. When I contrast this mythical individual with real people in my life (including myself, as I am definitely not free from neuroticism), I can’t help but imagine that this mythical person would also lack passion, creativity, empathy, attention to detail, and so many other uniquely human characteristics we prize. In fact, the thought experiment always leaves me feeling a little, well, depressed.

This article also raises important issues about the role of medical professionals in the disability experience. Under current policies, medical professionals have the authority to deem an adult as decisionally incompetent. Is any individual truly incompetent to make decisions regarding their own life? And if so, what criteria should be used to make that determination? Is there a magical cutoff on some assessment tool that means a person must give up their autonomy?

Furthermore, across all types of disabilities, medical professionals currently act as gatekeepers, determining who is or is not eligible to receive disability-related supports. This applies not only to income and lifesaving healthcare benefits, but also to vital educational modifications, communication aids, etc. a medically driven eligibility system not only penalizes people who don’t have the resources to access a medical proof of disability, but it also seats disability as an individual problem affecting a stigmatized few, rather than a part of the human condition that can be ameliorated in a cooperative way. I agree with the author in advocating a universal basic income in place of a medically driven disability benefits system. We must also find a way to bring down the cost of assistive technology and training so that it becomes available to all consumers who need them, without having to have that cost subsidized by a medically controlled service system.

How Would We Know If We Overthrew the Mental Health System?