Thursday, August 22, 2013

You've Got (Hate) Mail: Max Begley and the Tragedy of Hate Towards People with Disabilities

If we as a society are going to evolve to be more loving and less prejudiced, we need to realize that hate directed towards any one identity group does terrible damage to every identity group. I was deeply disturbed and saddened upon reading the hateful letter directed at an autistic boy and his family in Canada. A lot of media attention and awareness efforts are dedicated to the horrors of racial slurs… but ableist slurs should be treated with the same seriousness, because people with disabilities are also experiencing the struggle of confronting words and actions that degrade our community. Earlier this week, the grandmother of 13-year-old autistic boy Max Begley received the letter below: The anonymous letter has left Max’s family in shock and fear. The letter’s author even states to take “his non-retarded body parts and donate them to science” because he is a hindrance to everyone.” Attitudes like this are a threat to people with and without disabilities, because they contribute to a culture of deciding for others what constitutes a worthy life. The Begleys are hoping to identify the writer and charge “One Pissed Off Mother” for her actions. However, as of yesterday, Ontario police said the letter did not qualify as a hate crime, but stated that it is being taken very seriously nonetheless. Personally, I think the police have made a grave mistake in not classifying the letter as a hate crime. The definition of a hate crime is a crime “motivated by racial, sexual, or other prejudice, usually involving violence”. Yes, people with disabilities are part of that “other” and encouraging someone to move or “euthanize” their son is certainly violent rhetoric. If behavior like this is ever going to stop, people need to stop breezing through Huffington Post calling this incident “a shame” and call it out for what it is: a threat directed at another person just for being who he is, motivated by bias, hatred, and misguided fear. I feel sad that the writer was raised in such a narrow-minded environment, and has clearly paid the price by becoming ignorant. Ignorance is often the product of that which others teach us, and sometimes, we can’t blame people for being ignorant. However, there is a line. Some lessons should be understood by anyone with a beating heart, and basic human respect is one of them. A person doesn’t have to be highly educated to appreciate the value of another person. We cannot make excuses for this woman, or minimize her actions based on the notion that she was too ignorant to know better. Maybe she has never met a person with a disability. But people with disabilities are people, other human beings, and we surely have met, and loved another human being. Furthermore, the writer of this letter is a mother, and by virtue of loving a child, deeply and indescribably as parents do, she should know better than to degrade another mother’s son. The writer states that Max “scares the hell out of her ‘normal’ children.” That, ma’m is what happens when we teach our children fear. Perhaps your children would not be so scared if you taught them not to be afraid of people who are different than they are. Going through life afraid of what we don’t understand is no way to live. And if you ever read this, I want you to know that Max Begley’s mother once cradled her child as you did, and saw the world in his eyes. Words like yours I am sure put daggers through her heart, belittled the precious person in whom she has invested her life. How would you feel if someone did that to your kid? I am sure you would think of when you cradled your child and saw the world in his eyes. So, truly, you and your child, and Max and his mom are not so different after all. 
The article about the Toronto police response can be found here

Author's Note: Unfortunately, Jim Begley (Max's dad) is quoted as saying that "“A person that's that crazy or demented who would fabricate something like that ... it leads me to believe that they're very dangerous, and right now I'm scared for my son's safety.“
This quote suggests that people with mental illnesses are responsible for the incident, perpetuating the myth that people with mental illnesses are violent, dangerous, or scary. In reality, people with mental illnesses are much more likely to be victims than perpetrators of violence. Jim Begley's views do not represent my own. The Examiner article was posted only to give background on Max's story, and to provide the letter's full text. Readers of The Examiner article should be conscious that blaming people with mental illnesses for this horrible act is ableist. If we want to fight ableism, we must do it by offering people with all types of disabilities respect. The letter to Max's is not the work of someone with a mental illness. It is the work of a hateful, ignorant person.

Thursday, August 15, 2013

Subminimum Wages for Workers with Disabilities and Their Inherent Injustice

The America I believe in is about equal rights for all people. America should not be a place where justice is selectively granted, based on who you are and the life you lead. But that is what is happening for hundreds of thousands of workers with disabilities at organizations such as Goodwill Industries. Section 14C of the Fair Labor Standards Act (FLSA) allows businesses to issue “special wage” certificates that permit disabled workers to earn less than the minimum wage, usually in segregated settings. 14C is intended to secure jobs for severely disabled people, but people in these jobs are denied the employee protections given to able-bodied workers from the get-go. Some of those given “special” wages earn twenty cents per hour, and are not offered the opportunity to advance. In fact, subminimum wage workers in places such as Goodwill can be fired for making just two mistakes, and their salaries are calculated based on how many products can be assembled in a given time. It is immoral and nonsensical that able-bodied workers are given minimum wage ($7.25) by default, while disabled workers have to prove themselves repeatedly, and still may not earn $7.25 despite excellent work.
14C reinforces the age-old culture of low expectations for people with disabilities. In a time when we should be creating innovative support systems, many businesses are still taking advantage of this unjust provision. Some of you may be wondering, what’s so wrong with Goodwill? Aren’t they helping out disabled people who need jobs? The intentions may be good, and the practices may even be construed as compassion in action. However, the attitude that including people with disabilities, even in subminimum wage companies, is an act of benevolence is very damaging. Inclusion in the workforce is a right, not a privilege or a handout from those claiming to “look out” for people with disabilities. Paternalistic systems based on a misguided compassion paint people with disabilities as passive recipients, unworthy of their own voice. If we expect people with disabilities to be satisfied, even grateful, for a job below the salary guaranteed to all others, then we insinuate that the disabled community cannot make contributions of any real value. Thus, the cycle of oppression continues.
Furthermore, concerns about the financial viability of businesses without 14C should be dismissed. If Goodwill provided its disabled workers with minimum wage, the only ones experiencing a major loss would be the CEOs, some of whom make one million dollars annually while disabled workers are forced to accept less than a dollar per day, just because they have a disability. No one should be cashing a huge check as their workers are excluded from enjoying a basic right afforded to every other in this country. To allow subminimum wages is a sin, but to mask the injustice of this practice and call it compassion is an insult to every member of our human family, and every true act of compassion on the planet. The challenge before us is to transition to a model where special wage certificates join slavery as shameful parts of our past. This will not be easy, but it will be right, and it will be possible. Some businesses are already leading the way in offering employees the same wages and expectations regardless of disability status. One such example is Walgreen’s, a company that has moved away from the charity mentality to offer disabled workers true equality. With adequate training and creativity, even those with severe, multiple disabilities can be taught a real skill for real life, rather than a menial task in a sheltered workshop that they may never have the opportunity to leave. In fact, according to recent information I learned from National Federation of the Blind staff member Anil Lewis, 95% of those placed in sheltered workshops stay there. This proves the notion that sheltered workshops prepare workers for the open market to be a falsity. The severity of workers’ disabilities cannot justify the practice either. According to Samuel Bagenstos, those working in sheltered workshops and those working in the open market had comparative scores when they took tests to evaluate Activities of Daily Living (ADLs) (Black, Schartz & Schartz, as cited in Bagenstos, 2013). Our nation must be bold and tenacious in creating labor systems that provide meaningful work to all, and reject the premise of 14C. Workers with disabilities deserve better than a second-class position below the threshold of justice and equality. If businesses put as much effort into researching the interests, talents, and needs of people with disabilities as they did into making money, we as a country would take a giant leap forward. Justice has only ever come after the investment of great courage and resolve. The repeal of 14C is worth the struggle ahead. I am willing to invest my courage as my forefathers did to realize their vision. Justice for all workers will be a worthwhile reward.

Bagenstos, S. (2013). “The case against the 14 ( c) subminimum wage program.” National Federation for the Blind. Retrieved from

Support people with disabilities. Say no to businesses that give subminimum wages to workers with disabilities! Find out more about the issues here and speak up in favor of the Fair Wages for Workers with Disabilities Act of 2013

Friday, August 9, 2013

Disability Pride And Why We Need It More Than Ever

In our society, we hear all kinds of talk about diversity and cultural pride. But often, disability pride is notably excluded from these discussions, although we are the largest minority in the United States.
Unsurprisingly, disability pride in our youth is difficult to develop seeing as very few positive images are provided in our media saturated world. Just a few weeks ago, performers J. Cole and Drake had to issue an apology for calling their competitors “autistic, retarded.” Using disability as a ready made equals sign for negative qualities perpetuates the idea that there is something “wrong” with disabled people, and feeds into the idea that disabilities are traits to be ashamed of. Inclusion of disabled characters in books, movies, and plays is rare, and if it happens, the impairment is usually used as a symbol of evil and bitterness, as in the case of good old Captain Hook. On another note, many disabled characters are “cured” by the end of the story, or at least dreaming about it, when in reality, most of us remain disabled throughout life and still lead happy, successful existences. Think of the Secret Garden. Colin, the little boy who uses a wheelchair, is not only magically healed, but develops a winning personality in the absence of his disability. Think of Artie, from Glee. While it is widely believed that Fox hit a home run with Artie, but actually, Artie’s presence reinforced a lot of unoriginal attitudes about living with a disability. One of the only episodes that addresses his disability shows him dreaming about dancing on his feet. Had Fox really wanted to be original, they could have portrayed Artie as facing challenges, but perhaps made inaccessibility, discrimination, and ignorance a problem, not the fact that Artie cannot use his legs.
How do you think it makes young people with disabilities feel when their very being is used as an example of flaw and tragedy? From where are they to draw their self-image when people who look and live like they do are absent from the diversity spectrum, even within self esteem campaigns? Take for example The Dove Campaign for Real Beauty. The campaign comes from a place that is pure of heart, for certain, in its attempt to include real women instead of models, but even among these “real women” there are clear expectations about who fits the definition of beauty. Sarah N. Heiss notes in the Disability Studies Quarterly that the featured real bodies are “firm and hairless”(2011). There are no signs of wrinkles and if you look for a physically disabled woman among these “voices of resistance”, you won’t find one. Again, the message that people need to embrace unconventional beauty does not seem to include young people with disabilities. Oops. If we are to raise a disability proud generation, we must plant the seeds from a young age. We need to teach self love before the negative portrayals of our community assault the chance of finding body peace. When we teach our children about civil rights movements, we need to be sure they know Justin Dart and Ed Roberts, the great disability rights crusaders, as readily as they know Dr. King and Rosa Parks. Our colleges and universities need to accept people with disabilities as part of the vision of a diverse campus. We need to dream of a world where children aren’t trained to see their access needs as an inconvenience, and teach them to fix inequalities, not their bodies. Being disability proud does not mean a perpetual smile or the denial of challenges as a disabled person. It does not mean never complaining about the joint pains your disability causes, or never wishing you could shower without a personal assistant. However, it does mean knowing that people with disabilities have a colorful history, a thriving culture, and a worthy seat at the table when talking about diversity. It does mean helping our youth with disabilities to know they are created with as much care and artistry as any other person. Making this a reality is an essential step in being sure that young people with disabilities can envision themselves working, going to school, having a family, or whatever it is that makes them happy. I conclude with a look at two popular photos on Facebook (see below). The first shows an old woman seated in a wheelchair looking at her shadow on the wall. Her shadow appears as a young, able-bodied dancer and the caption reads: How others see you is not important, how you see yourself means everything. Yes, how you see yourself means everything, and by suggesting that a person in a wheelchair should see herself according to the conventional standards, rejecting her wheelchair, we can see quite plainly why people struggle to find a sense of pride. The image is both ableist and ageist, in a time when we should be teaching all people, not just those who look like us, to look in the mirror and embrace what they see. The second image shows a young girl dancing in her wheelchair, looking at her reflection just as it is. I hope that one day, our youth will be guided to do the same, and be proud. We have advanced ourselves as a minority, and a human family, when a little girl in a wheelchair can look in the mirror and see… a little girl in a wheelchair. I want all those girls, and boys, for the matter, to look in the mirror. And when they do, I hope they will say boldly, unapolegetically, this is me and I am proud of it.
 This post was written in honor of the mission of the National Youth Leadership Network, a youth organization devoted to empowering the young disabled leaders across the country. I am currently a Governing Board member.

Heiss, S. (2011). Locating the bodies of women and disability in definitions of beauty: an
analysis of Dove’s campaign for real beauty. Disability Studies Quarterly, 31.

Sunday, August 4, 2013

'Tis The Season: Thoughts on Hiring New Personal Assistants

The nitrile “healthcare grade” gloves are on sale at Costco, I'm trying to compress my life into a color-coded chart once more, and nearly prepared to tell you what time I will be showering—in November. That can only mean one thing… it is hiring season for personal care assistants. For those of you who don't know, a personal care assistant is someone who assists people with disabilities with all those decidedly awkward, unsexy tasks that are necessary to survive… dressing, bathing, going to the bathroom, fixing that wedgie you've had since you got up this morning, but haven't had a tranquil moment to take care of. Basically, anything related to basic survival and care that you thought was sacred, my PA has probably done it. Something that sets we cripples apart from the rest of the world is that after a certain amount of time, it stops feeling weird, and only when taken out of context does it sound quite questionable. For example, I assure you I would not make many nondisabled friends, or classy ones anyway, if I announced that I pay someone nightly to take off my pants. It's all too easy to forget that in most circles, there is no legitimate way to interpret that idea. Needless to say, I’ve had to come up with other things to chat about at dinner parties.
Although I’m used to it at this point, there’s still a slight uneasy hilariousness to the beginning of hiring season, as I sit back and attempt to advertise the opportunity to get a job, maybe the only job besides a nurse, that involves the bathroom, the shower,  changing someone’s clothes, and money without falling into that category of degrading side jobs you’d never tell your grandmother about. Writing the ad feels like a strange cross between a personal ad, a job opening, and an autobiography, as I click through the online job board trying to find a place for my performer of essential life functions among the calls for tutors, research assistants, house cleaners, and parrot sitters. “Student with a disability”… no too wordy, “Disabled student”… the word games go on for a while as I try to make butt wiping sound fun, educational, and more life-altering than washing dishes, bartending, or handing out popcorn at the home football games. Then, come the emails, as people inquire about what exactly they will be doing, leaving “including, but not limited to” as an indication that necessary skills may also mean good oatmeal making, getting a chip from yesterday out of my seat, or making certain that my Miralax doesn’t clump at the bottom of my morning milk. Then, there’s the first day, and it so often feels like a weird speed date that went a little more speedily than planned. There’s nothing like a new hire (read: ambulatory stranger), opening your bedroom door on the first day of school, exchanging favorite colors and zodiac signs with him or her, and moments after discovering we have the same favorite movie, winding up in the shower. Let’s not forget The Awkward Silence, as I become accustomed to yet another bathroom buddy, and clarify that can’t walk does in fact, mean can’t without the walker I mentioned in the brief overview of my disability. Soon enough, my friends at home know the heroes and villains of the personal care legion, and let’s not forget the brief cameos by those substitute overnight aides that answer the pager when I least expect it (introducing myself during a nighttime bathroom trip when my eyes are crusted shut is always fun!).
Hunched behind my laptop, reading through resumes, all of this comes to mind, and I cross my fingers that applicants’ “caretaking experience” refers to more than tending to a houseplant. Then, there’s the magic moment when I’ve finally hired someone, and alas, I know I will not be trapped in my bed eating bon bons after all. Replying a confirmation email with “Thanks for your interest! We’ll be pooping together in no time!” isn’t likely to charm new employees, so I type a quick “Looking forward to working with you!” and the adventure begins again.