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Five Stages of Inclusion

Recently I was talking with a colleague who just came back from a trip to India. She mentioned the contrasting levels of disability inclusion that she saw in different places within the country. It made me think about the differing types of inclusion and exclusion I have encountered in my own experience as a disabled person, a researcher, and an inclusion trainer.

Inclusion is not a binary “on/off” concept. People have differing emotional reactions to disabilities, which fuel distinct behavioral reactions that can sometimes include and exclude at the same time. I have come to observe that inclusive attitudes often evolve in stages, though. As people learn more about the disability experience, they can move from one stage to the next. I also believe that disabled people can move through stages in their own self-acceptance that roughly parallel the stages that a nondisabled person might traverse.

Here is one possible five-stage model of inclusion. Like all stage models, this one may not apply to everyone’s experience. But I do think it can help us understand how many people’s reactions to disability can evolve over time. I am very interested in other people’s feedback on this five-stage model.

Stage 1: Antipathy and Active Exclusion. People in this stage reject disabilities and actively bar disabled people from their communities. Fortunately, most people don’t start out at this stage. But when they do, their behavior is usually motivated by strong emotions such as fear, disgust, contempt, or envy toward disabled people. They may believe that disability is a curse, that it will spread from person to person, or that disabled people drain resources or take up undeserved special treatment. Institutionalization, eugenic policies, and disability hate crimes are firmly planted in this stage. For a disabled person, Stage 1 may be characterized by a strong sense of self-loathing, as the individual may view their disability as a blemish on their own character.

Stage 2: Tolerance or Passive Exclusion. For most people in Stage 2, disability isn’t really on their radar. If they encounter a disabled person, they may tolerate that individual, but may not make a real effort to include them. Communities at Stage 2 don’t actively exclude disabled people, but they also don’t incorporate accessibility or universal design, leaving many people passively excluded. An employer at Stage 2 might consider a disabled job applicant, but ultimately hire a nondisabled competitor who seems less complicated and easier to train. Most people without disability contact start out at this stage. For the disabled person, Stage 2 may mark an attitude of minimization, where the individual might conceal their disability (if they can) and generally distance themselves from disability communities.

Stage 3: Helping and inspiration. People in Stage 3 include disabled people, but mainly out of a sense of pity, obligation, or a desire to help. People in Stage 3 may feel emotions of warmth or affection toward disabled people, but they do not yet see disabled people as true equals. They may be motivated to include disabled people in order to relieve their own distress or sense of obligation, and as a result, they may want to control the interaction and be in charge of deciding *how* to include the disabled person. Family members of disabled people can be at any stage, but they are at particular risk of getting stuck in Stage 3; they may be pulled into this stage by their healthy feelings of love and affection toward their disabled relative, but then have trouble moving to higher stages where their relative is seen as an equal. Employers in Stage 3 may be willing to hire disabled people on an unpaid or temporary basis as a charitable act, but they don’t recognize the benefit of hiring disabled workers for their own bottom line. People in Stage 3 may also be big consumers or producers of inspiration porn, exaggerated depictions of disabled people doing ordinary things. Underlying both helping and inspiration porn is the sense of disabled people as “other,” people “not quite like us” who are either helpless or superhuman. For a disabled person, meanwhile, Stage 3 might involve behaviors of overcoming or overcompensating for disability, still striving to distance oneself from disability and the associated community.

Stage 4: Individual Equality. People who have moved into Stage 4 begin to recognize that disabled people deserve equal treatment. They recognize disabled people as people like them, and understand the importance of respect and dignity in their interactions. Employers at Stage 4 will hire disabled people who are genuinely qualified for the job, and they will be willing to make accommodations on an individual basis. However, people at Stage 4 may not yet recognize the value of cross-disability activism or universal design. They may be willing to make accommodations for individual disabled people in their lives, but may not anticipate the need to make environments accessible for other disabled people who might come in the future. Disabled people at Stage 4, meanwhile, will advocate for their own needs and demand equal access for themselves, but they may not get involved in broader activism.

Stage 5: Inclusion as Social Justice. People at Stage 5 recognize inclusion as a universal imperative. They recognize the integral role that disabled people play in society, and are motivated to design things so that people with all kinds of abilities or impairments can participate. Employers at Stage 5 have inclusion committees and a strong plan for inclusive hiring. The autistic blogger who writes about autism while ensuring that all photos and videos are captioned for blind and deaf visitors is at Stage 5. People at Stage 5 also recognize the intersectionality between disability and other social identities. Disabled people at Stage 5, meanwhile, will engage in collective activism even if the particular issue may not impact them personally, if it impacts other members of the disability community.

In my experience, people can often move from lower stages to the upper two stages through exposure and education. I am interested to investigate some of the factors that might guide that process. For example, some people (like my husband) skip the helping stage entirely, and move fairly quickly from neutral tolerance of disabled people (Stage 2) to respect and equality (Stage 4) and, sometimes, Stage 5. For other people, the helping stage seems to be a necessary part of their inclusion journey. And, in fact, the helping stage isn’t always bad. For a person or a community in Stage 1, where negative feelings toward disabled people dominate, getting them to Stage 3 (the helping stage) may be a real sign of progress.

There is much that we still don’t know about how to teach disability inclusion and acceptance. But, one lesson of this stage model (to the extent that it accurately describes people’s attitudes toward inclusion) is that intervention may need to look different depending on the current stage that an individual or a community occupies. For a community where disabled people are actively shunned (Stage 1), tolerance or helping may be the short-term goal. For a person or a community stuck in the helping stage, in contrast, a good goal may be aiding them to recognize the equal personhood of disabled people. And for a person or community in Stage 4, there is room to grow into Stage 5. A one-size-fits-all inclusion campaign is unlikely to lead to progress across the board. Instead, as advocates, we need to adjust our approach based on the attitudes and concerns of the particular communities in which we work. A customized approach is likely to make the most impact.

Three Things Clinicians Should Know About Disability

“Clinicians also wield enormous power over the care and treatment of people with disabilities, a group every human will become part of over the life course. Those who wish to advance their knowledge and improve health outcomes would thus benefit from reflecting upon the meaning of disability and the moral obligations and responsibilities owed to communities of people with disabilities.”

Medical professionals are intimately involved in the lives of disabled people and their families, where they play a number of significant roles. They determine who is and is not considered disabled, provide treatments to ameliorate the medical aspects of disability, and often set the tone for how newly diagnosed individuals and their families appraise the disability. In addition, like nondisabled people, disabled people will at times rely on doctors to help them prevent, diagnose, or treat ailments unrelated to their disability. Biases or miscommunications between disabled patients and nondisabled providers can compromise the quality of care received. On the other hand, medical providers have the power to meaningfully improve the lives of disabled patients by connecting them with appropriate supports and services.

In this article, Dr. Reynolds lays out three interrelated issues that can impact patient-provider relationships across ability lines: assumptions about poor quality of life with disability; ableism; and the distinction between disability, illness, and disease. He then proposes that clinicians have three responsibilities to disability communities. They must practice “disability humility” and be willing to learn about nonmedical aspects of the disability experience; they must improve communication across ability lines; and they must recognize the authority of disabled people as experts on their own lives, and “elevate their voices.”
Three Things Clinicians Should Know About Disability

Special Kids Get Picked Last: “Special Needs” Has Become a Dysphemism

Our data suggest that special needs has already become a dysphemism (a euphemism more negative than the word it replaces). Special needs will likely become a slur, if it is not already, and it might eventually become a dysphemistic metaphor, akin to dumb, lame, crippled, deaf, and blind. These linguistic transitions, along with the data reported here, recommend against using the euphemism special needs and instead using the non-euphemized term disability.

Disability has been called by many names. Perhaps one of the most commonly used, and the most indirect, way of labeling disability is with the term “special needs.” I heard that term a lot growing up, and I never liked it, but I couldn’t put my finger on what I disliked about it. Perhaps it was that the phrase was often used in a condescending way, to signify difference or special treatment, or to refer to a segregated place like a “special needs classroom.”

When I started doing inclusion work, I was thrilled to hear fellow self-advocates sharing my dislike for the term “special needs” and advising that we just use the term “disability” instead. We can debate linguistic reasons why one term is better than the other, but ultimately, I’m interested in using the term that is most likely to lead to positive, inclusive interactions with nondisabled people. So, I was fascinated by a research study comparing how a dults in the United States (most nondisabled) judge individuals when they are labeled as having a disability vs. having special needs. (Full article is linked at the end of this post).

Dr. Morton Ann Gernsbacher and colleagues at the University of Wisconsin-Madison designed an online study where participants read through six scenarios. In each scenario, they had to rank-order their preference to partner with four different individuals. For example, in one scenario the participants read descriptions of four potential college roommates and ranked them in order of whom they would prefer to room with, while in another scenario, they rank-ordered four potential basketball teammates, and in a third, they rank-ordered possible partners for a cooking class. The researchers randomly shuffled the scenarios for each participant, so that each participant saw one scenario where one of the potential partners had “special needs,” a different scenario where one of the partners had “a disability,” and a third where one of the partners was labeled with a specific disability (randomly assigned to be either a sensory or a neurological disability). Besides the disability labels, the partner was described in an identical way for all participants. The researchers looked at the participants’ rankings and calculated, across all the participants and scenarios, how often the partner with special needs/a disability/a specific disability was ranked last.

By random chance, each partner should be ranked last about 25% of the time. So when a particular partner was ranked last more than 25% of the time, this signifies discrimination. Indeed, when the partner was labeled as having “a disability,” discrimination occurred, with the partner being ranked last 33% of the time on average. Discrimination also occurred when the partner was given a specific disability: across the different types of disabilities, they were ranked last 35% of the time. But the worst discrimination occurred when the partner was labeled as having “special needs.” Under that condition, across scenarios, they were ranked last 40% of the time. Statistically, partners were significantly more likely to be ranked last when they were labeled “with special needs” than when they were labeled either “with a disability” or with a specific impairment.

At the end of the study, the researchers also asked the participants to write down the first five words that came to mind when they saw the term “special needs” and the term “disability.” They categorized the responses and found that when the participants were thinking about “special needs,” they wrote down more negative words like “annoying,” “helpless,” or “needy” than when they were thinking about “disability.” In contrast, when thinking about “disability,” the participants wrote down more positive words like “strong,” “capable,” or “acceptance” than when they were thinking about “special needs.” In addition, the term “special needs” was associated more often with intellectual/developmental disabilities, whereas the term “disability” was associated more often with physical impairments. So, it is possible that some of the bias observed could reflect the heightened prejudice and stereotyping against people with intellectual and developmental disabilities compared with physical and sensory disabilities.

What’s wrong with saying “special needs?”

The researchers postulate three reasons why “special needs” might evoke more discrimination than “disability.” First, the term “special needs” is imprecise. When someone is labeled as having “special needs,” it is unclear whether they have an impairment at all, or how severe that impairment is. So, people might assume the worst, or feel uncomfortable with the ambiguity. Second, “special needs” is often associated with segregation: Institutions like “special education,” “special needs classrooms,” or “Special Olympics” are all, by definition, segregated to only serve disabled people. The phrase “special needs” may implicitly justify segregation, giving segregated institutions the praise of being “special” while implying that people who attempt to be included in the broader community (e.g., applying for a college roommate in an integrated dorm) do not belong. Third, the researchers cite examples of “special needs” being conflated with “special rights” or “special treatment.” The term “special needs” may activate feelings of envy that nondisabled people sometimes direct toward disabled people whom they perceive as unfairly taking “special” privileges.

Perhaps a phrase is just a phrase. And, what really matters is how we treat one another. But, this study shows that phrasing does matter. People can discriminate in very real ways based on first impressions, and when one person is described verbally to another, initial labels can set a powerful tone for those first impressions. This may be especially true when a parent or caregiver is speaking for a disabled person-someone who is too young to speak for themselves, or needs communication support. Describing such an individual as “having special needs,” even with the best of intentions, could make it harder for that individual to be accepted or valued in community settings, be it a daycare center, a sports team, a school, an adult recreation program, or a job.

In recent years, disabled people have pushed to replace the euphemism “special needs” with the straightforward term “disability.” However, many nondisabled people, particularly parents, educators or caregivers of disabled people, cling to the term “special needs.” This has resulted in another polarized debate between disability “insiders,” advocating language that they have claimed as identity-positive, and “outsiders” using language that is personally comfortable for them. A more disturbing development is the widespread use of the phrase “special needs parent,” which nondisabled parents may use to describe their own identities or experiences without regard to their child’s identity or language preference. While nondisabled parents certainly should be able to share their own experiences raising disabled children, it is important that they are sensitive to the complex history of ableism, including the ableism captured in language. As the researchers point out at the end of their paper, phrases originally intended to be euphemistic-like “special needs”-can eventually become “dysphemisms,” words with more negative connotations than the words they are replacing. Like other disability terms, “special” is even being used as a generic insult. Rather than just trading out euphemisms every few decades, we must work to stamp out the underlying biases and stereotypes that lead us to want to use euphemisms in the first place. Disabled people, including those with intellectual/developmental disabilities who are frequently stripped of their voices, must be front and center in that process.
Read the full study here

Eradicate Ableism: Our Lives Depend on It

Content warning: detailed discussion of filicide; discussion of Applied Behavior Analysis.
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“If the parent is so antagonistic toward their child that they’re contemplating violence, then something needs to change and it’s not the child — it’s the parent.” Samantha Crane, Director of Public Policy, Autistic Self-Advocacy Network

On this blog, we talk a lot about “benevolent” ableism-people being overly helpful or patronizing toward disabled people. But there’s a much darker side to ableism, too. Like other minority groups, disabled people are disproportionately targets of violence and abuse. You may not hear it in the news, but there were 128 disability hate crimes in the U.S. in 2017
But unlike other minority groups, disabled people are targets of one of the most shocking forms of violence: attempted or actual murder by their family members.

The Ruderman Family Foundation reviewed media coverage between 2011 and 2015 and found reports of 219 disabled people in the United States and Canada who were killed by their primary caregivers-mainly children killed by parents, or elderly people killed by spouses. That number, likely an under-report, represents almost one murder per week
It’s a trend that can’t be explained as a few extraordinary cases.

What could possibly drive a parent to harm their own child?

I’m going to present a case study, of an attempted murder that occurred in 2013. And we can examine what happened, and what might have prevented it.

Kelli Stapleton lived in rural Michigan with her husband and three children. Her middle child, Issy, is autistic. According to Kelli, Issy had been aggressive since she was two years old, mainly toward her mother but also at school. When Issy was 13 years old, her mother enrolled her in a private behavioral treatment center for 7 months, and with a strict regimen of positive reinforcement for “good” behavior, the aggression decreased. But, when Issy came home, she started hitting Kelli again. And, Kelli learned that the local public school was unwilling to implement Issy’s strict behavior plan.

Kelli broke down, and devised a plan of escape for herself and her daughter. On the Tuesday morning after Labor Day 2013, she packed up an old van with pillows, blankets, two hibachi grills, and fixings for s’mores. She drove Issy into the woods where they shared s’mores. She gave Issy a double dose of her antipsychotic medication and brought the still-lit grills into the van, and shut the doors. As they slept, the van filled with smoke and carbon monoxide. By the time they were rescued that evening, Issy had developed a traumatic brain injury and was in a coma for four days. Kelli was charged with attempted murder. Ultimately, she pleaded guilty to first-degree child abuse and was sentenced to 10-22 years in prison.

I’m not even going to get into the horrifying amount of support that Kelli got on social media, with posts arguing that this was her only option. Nor will I talk about the disturbing trend of journalists centering disability filicide stories on the killer’s “burden” rather than on the victim. Or the fact that, unlike Kelli, many people who kill their disabled family members get off with much lighter sentences than those who kill their nondisabled family members.

No, I’m a social psychologist interested in predicting and controlling human behavior. So I don’t want to talk about the after, I want to talk about the before. I delved into Kelli’s blog and media appearances to find out what kinds of thoughts, emotions, and behavior precede such a tragedy.

And, the clues were strikingly obvious.

Kelli started a blog exactly one year before her crime, called “the Status Woe.” The blog started innocently enough, with some self-deprecating humor (not involving her daughter) about a bout of diarrhea on a camping trip. But then, the blog quickly turned to the evils of autism. As I read, it became clear that Kelli was all out of love or compassion for her daughter. She had been on a lifelong journey of trying to cure her daughter’s autism, starting with a rigid home program of applied behavior analysis (ABA) during Issy’s toddler years. She’d tried all kinds of diets and supplements, and behavior plans, to no avail.

In one blog post, titled “Autism’s Hard to Love Club,” Kelli wrote that “I have a daughter firmly planted in autism’s Hard to Love club” and then she preceded to describe issy’s overweight and poor personal hygiene to total strangers. In another post, deceptively titled “Inclusion: Doing It Right,” Kelli wrote about how she would draft the “mothers of the class”-peers and older children with helping dispositions- at Issy’s school to be her “helpers” and assigned “friends” in elementary school, and how all the kids wanted to be Issy’s “friend” so they would gain status and approval from adults. (Disability Wisdom readers know that’s not real inclusion!) Embedded in this post about fake inclusion is the comment that when new kids meet Issy, they discover that “Clearly she isn’t “normal.” Kelli also posted videos of Issy’s aggressions on her public blog, and the videos were edited such that the cause of the aggressions was never clear. She blamed Issy’s aggressions on “autism, hormones, and whoknowswhatelse.”

Kelli also gave a radio interview around the same time as she wrote her blog. On the interview, Kelli admitted that her ABA treatment may have contributed to Issy’s aggressions, saying, “I’ve been in her face since before she was two years old” reinforcing Issy’s every act as she tried to shape non-autistic behavior. On the air, Kelli didn’t sound like a murderer. But, her entire focus was on treating Issy. when the psychiatrist on the show asked Kelli if she had gotten counseling for herself or the rest of the family who was impacted by Issy’s aggressions, Kelli kept saying she just needed to focus on Issy and getting Issy’s behaviors under control before taking therapy herself. The psychiatrist warned that aggression was a family issue, that the entire family was involved and that “eventually, someone is going to get hurt.”

I cannot pretend to imagine how hard it must be to live with a family member who is aggressive on a regular basis. Undoubtedly, stress and burnout contributed to Kelli’s tragic choice. But, aggression is not an inevitable consequence of autism. Antisocial behavior never occurs in a vacuum. It not only impacts the entire family, but it is caused and reinforced by interplay between one’s internal neurology and the external environment. And perhaps one of the least-appreciated factors contributing to a disabled person’s alleged behavioral difficulties is ableism in the family unit.

I wonder what it would have been like for me, if my parents had kept me on such a tight ABA leash, getting in my face and correcting my every action since before I was two years old. If I knew that my parents not-so-secretly wished I wasn’t born the way I was and did everything they could to try to change me. If my parents filmed me in my most vulnerable moments and put those videos out along with weight-shaming comments on the Internet. If I had sensory needs my parents and teachers ignored. If I had no outlet for expressing my turbulent emotions during puberty, and if my attempts at communication were dismissed.

That’s right: I’d probably start hitting, too. And I’d probably keep aggressing if I learned that aggression was the only way for me to control my own life.

Issy Stapleton nearly died because of her mother’s ableism, plain and simple. In an interview with New York Magazine after her sentencing, Kelli recounted the day of the crime, saying of her fantasies of the afterlife on that day, “We will be done with autism completely … “For the first time
in my life I am going to be able to have a real conversation with her,
and see her. Get to know her, without the perseverations and the
aggression. In her real voice, not this robot voice.”

Kelli could not bring herself to accept the child she had. She tried in vain to change Issy, and Issy responded with aggression. The violence escalated until Kelli came to the conclusion that a murder-suicide was the only way for her to get the child she really wanted.

Preventing disability filicides goes far beyond just giving parents more respite services or better insurance coverage for therapies. (Indeed, Kelli was on her state’s waiver, where she had nnearly 24-hour help with Issy at home. Other parents with less support don’t hurt their children). Prevention needs to start much earlier. Anyone who plans to become a parent must get good, balanced information about disabilities and come to understand the normality of disability. Because, the statistics show that one in every 88 parents will bear an autistic child. Up to one in five parents will bear a child who, at some point in life, becomes disabled. Disability must be presented in our schools, our workplaces, our neighborhoods as a natural part of the human condition. People planning to become parents must have opportunities to examine their biases about disabilities and eventually come to accept the possibility of having children whose abilities might differ from their own.

From a policy perspective, this might mean having disability studies as a mandatory course in high schools. It might mean that whenever a child is diagnosed with any disability (whether in utero, at birth or later in childhood), the family is automatically connected with at least one self-advocate bearing the same disability. And, it means that when a child or teen presents with behavioral difficulties, assessment and treatment must focus on the entire family unit, not just the one family member manifesting symptoms.

We need to work together to eradicate ableism. It is literally a matter of life and death.
For Further Reading:
Kelli Stapleton Can’t Forgive Herself. Can You?
Untwisting Perceptions: Autism, Parenting, and Victimhood
The Cost of Noncompliance is Unreasonable
Kelli Stapleton. Still Relevant.

Dear Nondisabled People, Episode 1: Arielle Silverman and Zoe Joyner

Photo of Zoe Joyner
Photo of Zoe Joyner

Last summer I worked with one of our Project RISE students, Zoe Joyner, to create a podcast series for the Weekly Wisdom blog. Zoe has a passion for storytelling, and over the course of a summer internship, she created the “Dear Nondisabled People” series with five episodes featuring different disabled self-advocates. Zoe developed the interview questions, led the majority of recording, and performed basic editing on the finished interviews. In the process she also learned about the past, present, and future of a community to which she belongs. After her summer internship with Disability Wisdom, Zoe has begun her freshman year at Spelman College, where she is majoring in history and communications.

This week I am presenting our first episode in which Zoe and I interviewed one another. It is a kind of “practice” episode (and my voice is a bit worse for wear because we had to re-record it after a technical glitch). But, this episode captures the lived experience of a young self-advocate alongside my own assessment of where we stand in the disability community, particularly in the United States, and where we are headed. Click the link to listen, or if you prefer, read the transcript below.
Listen to Episode 1

Zoe Joyner: Welcome to the first podcast of Dear Nondisabled People. My name is Zoe Joyner. I have a vision impairment called CVI or Cortical Visual Impairment. It’s when the brain has trouble processing what it sees. I describe it as looking through Swiss cheese.
Arielle Silverman: My name is Arielle Silverman, Principal of Disability Wisdom Consulting and the primary writer on the Weekly Wisdom blog. Thank you for tuning in today and this first episode, Zoe and I are going to co-host and ask each other some questions. As far as my disability background, I am nearly totally blind. I can see some light and shadows due to a condition I was born with that is called Leber’s Congenital Amaurosis. So today we are both going to be sharing a little bit about our own experiences about disability as well as some knowledge that we have from the disability community. I’m going to start by asking Zoe a couple of questions. First of all, Zoe, could you tell us about some challenges you’ve faced in your life and how you have overcome those challenges so far.
Zoe: My challenges have been speaking up with teachers. There was also challenges when I was little of figuring out if I had any other disabilities like ADHD because it was hard for me to focus because of my vision. I am attracted to motion, so it was a lot of hit or miss things. Also, I have learned to think that I am a trailblazer because a lot of kids with my vision impairment aren’t as academically focused. Since it is a brain injury, they have a lot of other challenges. I have learned to speak up more, especially through email because I can be very self-conscious so it’s easier for me to email a teacher than talk to them face-to-face. And also, I learned that writing a letter to my teachers during the beginning of the year can stop simple things like forgetting to enlarge things and hitting that in the beginning, so I don’t have to remind them so much throughout the year. I have some things to fall back on if they’re not doing it.
Arielle: In a related question, how has your childhood experience impacted your career choices so far in your life?
Zoe: I really liked history growing up. I used to like Math, but it got a little bit more visual like with Geometry. I’ve always liked stories, so that’s why I am interested in podcasting, and not only like reading stories, but I also like hearing about others and sharing the with the rest of the world who can benefit.
Arielle: Great, well thank you very much. You have some questions for me??
Zoe: what is the mission of your organization
Arielle: So, I am simply a solopreneur working for myself. It started in 2016 and the name Disability Wisdom has a double meaning. First of all, I believe very strongly that all of the knowledge and wisdom about living with a disability should come from those of us who actually have disabilities. The main objective of Disability Wisdom Consulting is to bring out the lived experiences of people with disabilities to educate others, both formally through research projects and interviews as well as informally through these podcasts, blog posts, and training materials that are developed collaboratively by people with disabilities. The other meaning of the term disability wisdom comes from Erving Goffman, a Sociologist who wrote about stigma. He used the term wise to refer to what we would today call allies, people who don’t themselves have a characteristic, but who empathize and understand the experiences of people who do have that characteristic and people who treat those of us who have a stigmatized characteristic in the same way as people who don’t have that characteristic. My goal with Disability Wisdom is to help people become allies by harnessing their natural curiosity and willingness to work collaboratively with us and support us as allies.
Zoe: has recent legislation affected your organization or people with disabilities in general?
Arielle: there is some legislation recently that has been proposed that could be problematic for people with disabilities. One example is the ADA Reform and Education Act that was passed in the House of Representatives which would weaken the enforcement of the Americans with Disabilities Act. The whole point of the Americans with Disabilities Act or ADA is to ensure that places of business that accommodate the public are accessible to people with disabilities. In order to be effective, the ADA needs to be enforceable and people need to have a mechanism for complaining if they identify violations. The newly considered legislation would weaken the ADA by making it harder and more complicated for people to enforce it and make complaints. That has been concerning a lot of people. The other major issue that has been coming up a lot recently is proposed legislation that would weaken Medicaid services. A lot of people with disabilities have incomes below the poverty line because they are unemployed or underemployed or have preexisting health conditions that employer coverage health insurance may not cover, so they literally need Medicaid to survive. Also, a lot of people with developmental and intellectual disabilities rely on what is called Home and Community Based Services, different kinds of personal assistance, people who can help them remain in their homes and communities. Those services are funded by Medicaid, so threats to Medicaid could threaten the livelihoods of a lot of these individuals. I will say that I think the main way right now that this proposed legislation has impacted the disability community is by bringing us together across impairment lines, in a lot of cases to fight and oppose the new legislation.
Zoe: How do you think the life of people with disabilities has changed over the past fifty years?
Arielle: there have definitely been a lot of gains, some steps forward and some steps back. For example, legislation was passed in the 1970s that requires schools to accommodate students with disabilities. It used to be the case that a child in the United States couldn’t necessarily get into a public school unless they happened to have parents who fought for them and had the resources to get them in. Now, it’s enshrined in the law that children with disabilities are entitled to a free appropriate public education in the least restrictive environment. Basically, that means in most cases, kids can go to their neighborhood public schools with their siblings and they can get the accommodations they need. So that has been a huge change. But there have also been some steps back. For example, blind kids used to be educated in segregated schools, for example boarding schools for the blind and that had its own problems but one of the good things about it is they often received early instruction in Braille and other critical blindness skills. Now, these kids are being educated in their neighborhood schools but because of funding deficiencies and short staff, a lot of districts just don’t have a lot of teachers who are qualified, so these kids aren’t necessarily getting Braille and other critical blindness skills. So that’s one way that legislation has moved us far forward but there have also been steps back. I also mentioned the Americans with Disabilities Act which has also created a lot of opportunities in employment and access to the communities that we live in. It also has created its own challenges. People are afraid of lawsuits and so they end up kind of hiding their disability prejudice in other ways. In the 1970s, an employer might come out and say, “we don’t want you working here; it’s too much of a liability.” But in 2018, people are afraid to say that but they still think it, so instead they kind of disguise their discrimination in other ways saying we have already filled the position. They come up with excuses and that makes it more difficult for people to advocate for themselves. One final change that has been huge in the disability landscape has been technology that has allowed on one hand access to a much wider array of information and devices but on the other hand, if the technology is created in such a way that it is not accessible, sometimes that ends up closing doors as well. So, one example of that might be appliances like microwaves, washers and dryers that used to have dials. For a blind user, the dial might not be accessible, but you could put stickers on the dial to make it accessible. Now that we have these new-fangled touchscreen devices, it is much more difficult to access those devices and make the right modifications. It is a lot of two steps forward one step back, and there is definitely potential for the lives of people with disabilities to get better, but we have to work together as a community and be vigilant.
Zoe: do you think our country is going in a positive or negative direction?
Arielle: I would say overall that we are going in a positive direction. I want to be optimistic. I think the clients I have worked with in the last two years have genuinely been interested in including people with disabilities and understanding that we have things to contribute, that we’re not just recipients of aid. I think there is a lot of genuine interest and understanding that disability is not just an obscure thing, that it actually does affect up to one in five people and that including people with disabilities should be a priority. So, I think that overall, we are going in a positive direction, but there are competing interests that are creating threats to some of our basic programs like Medicaid, some of our healthcare programs, and the ADA. We need to be vigilant to those threats and how to acknowledge some of the competing interests, acknowledge that they have validity, and then try to negotiate compromises with lawmakers to ensure that our rights are still being protected.
Zoe: do you have any final thoughts?
Arielle: The only last thing I would say is that I am very appreciative to those of you listening to this podcast series and reading the Weekly Wisdom Blog, both those of you with and without disabilities. For those of you without disabilities, I think that an important first step to becoming allies is to listen to what we have to say and to read what we have to say. I would encourage you if you are working in the disability field in any way or working with an organization that serves people with disabilities in any way, that you pay attention to what we have to say, read our blogs, read our literature, listen to our podcasts and videos and contact representatives from disability organizations to learn more. I would also say the same thing for disabled people to learn about other impairments that you might not be familiar with. The best way to learn is to talk to us, listen to us, and interact with us. Zoe, is there anything that you want to add?
Zoe: I think this podcast is not just important for allies, but also within the disability community. I didn’t have many mentors growing up and I didn’t meet another person with a vision impairment until my junior year of high school when I did the LIFE Program through the Department of the Blind and Visually Impaired. They taught me that I could be independent.
Arielle: Mentoring and friendship within the disability community is very important and something that we can’t take for granted because a lot of us do grow up in families, schools or communities where we are the only one or think that we may be the only one who has a particular disability or has any disability identity. Any way that we can bring people together is really valuable. Thank you very much for tuning in. We will see you on the next episode of Dear Nondisabled People.
Zoe: See you next time.