An Open Letter to the Expectant Mother

Dear Expectant Mother,

I have a disability. I expect you’ve been told that I am the “news every mother to be dreads”. It’s not your fault you feel this way. The medical community has trained you to think that the worst has happened if your baby is born and found to be “like me”. Pregnancy message boards and magazines, instead of telling you that if your child does have a disability, he or she can still be happy, assuage this concern by telling you that “only one in thirty three babies is born with a birth defect”, according to the CDC. It’s not your fault that the doctors and nurses have presented the future as bleak by default should your baby be “like me”. They are merely repeating what our culture has told them for so many years. But before you lose sleep over the possibility of a life like mine, please listen to me, if you love your baby as deeply as you say you do. Do not be afraid. You have every right to be a little apprehensive should your child be disabled, because you will need to learn new things, and be prepared for the occasional unkind question. But please, do not be afraid. It pains me to know that my life, the life I love, is used as a scenario to scare you. I am good. I am happy. I am alive. And if any baby born to you has a disability, that baby can be the same. I dream of the day, when disability or not, the doctors will tell you, “Congratulations, you’re pregnant, and I know your baby will be beautiful”. I hope they will teach you to see someone like me as one of the trillions of enchanting human variations that may come to be as a result of you becoming a mom. I hope that they will acknowledge the extra wit, humor, and patience it requires to raise a disabled baby, but also acknowledge that if it happens, you will meet some amazing people. You will be exposed to a brilliant culture, and be able to know things so many of your “mommy friends” never will. I hope they will teach you to fear things like unkindness, selfishness, and lack of respect in your child, instead of disabilities. And if they don’t teach you, I hope you will teach them… because having a good heart is far more important than being able to walk.

If you have a baby that is so called “normal”, but knows nothing of treating others with love, you are in for a far more difficult life than another mother, whose baby will grow to be an exemplary being with a disability. Think hard about what you should truly be afraid of. Then, instead of wishing for a child who can walk, and talk, and see, and hear, and learn like all the others, wish for one who is kind, generous, compassionate, and alive… because any mother with a child like that is the luckiest mommy on earth. I wish you luck and thank you, because you have the most important job in the world. And I hope that if you see me pass by you on the street, you will notice my rattling, vibrantly decorated wheelchair, and then notice that I am a happy person.  I hope that you will close your eyes, and wish with every little piece of your heart, that the baby you’re expecting will be happy too. And then, you will realize that maybe; you want a child like me after all.

Love,

A “Grown-Up” with a Disability

If I'm Your Inspiration... Get a Hobby!

I do not look like a hero if you ask me. I don’t have any magical powers. A cape would get caught in my wheelchair. It takes me a half an hour to get the milk and pour it into a cup, and my attempts to get a comic book written about me have proven fruitless. However, in certain circles, it seems that people think me to be heroic. I was recently rolling on campus with some new friends who also use powerchairs when we were stopped by a nun who excitedly informed us that we were her heroes and it “was so cool to see us”. While I am glad to bring light to someone else’s day, I cannot understand what about a person in a wheelchair doing ordinary things is so inspiring. I was not out rescuing a cat from a tree, giving CPR to a dying person, or making an intellectual breakthrough. I was out getting ice cream… at 8:30. I can only imagine the legion of media coverage we would have attracted had we been getting ice cream in the dark.

I know that people mean well when they tell us we're inspiring. But intentions aside, putting people with disabilities on a pedestal for doing regular things indicates a serious problem of low expectations. Heroes are people who do something unexpected, extraordinary. I should not be considered a hero for doing ordinary things that everyone has the right to do. If society does not expect me to leave my house to get ice cream, then therein lies the problem. Just like those without disabilities, a girl going to the grocery store in a wheelchair should be just as unexciting as a girl going to the grocery store on her own two feet. Calling a person in a wheelchair a hero for getting up in the morning reinforces the stereotype that we as people with disabilities should be bitter, angry, couch-dwelling hermits. I have been known to sit on the couch and kill a bag of chips every now and again, but just like able-bodied people, my expectation is that yes, I will leave the house, go to school, hang out with my friends, or go shopping in a thoroughly uninteresting way. And I hope that one day the notion of any of this being inspiring will be laughable.

 I can't wait to have a deathday party for the piles of memes that applaud disabled people for existing. If we are given prizes for existing, the world is allowed to assume yet again that our quality of life must be terrible, when in reality I am very satisfied with things as they are. Furthermore, when society stops believing that disabled people doing things with their lives are the exception and not the rule, the proper supports will be there because we expect them to be and not be there as a special project for “special” people. Real, meaningful inclusion can exist only when society stops treating the success of a disabled person as though it happened by chance or exceptional courage. Success happens when people are given support and included without fanfare, and given the opportunity to join the ranks of ordinary successful people who go forward with their lives.

If I am to be inspiring, I want to be inspiring because of my skills or talents, because of the unique mark I leave on this world. Measure me by the same standard as my walking counterparts. If I go to school and get a job, raise a family, and have my own place, allow me to be just a person engaged in everyday life, if I create a masterpiece someday that would be inspiring by any (wo)man’s standard, then we can talk. Until that day, when I wake up in the morning and roll off to class, think to yourself, “how unoriginal. It’s like she does it everyday or something.” And don't think for a minute that the life I live is something you couldn't handle. If one day you found yourself in my seat, you would be amazed at how natural the choice to go forward felt… because going forward is what living people do.

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: http://www.examiner.com/article/autistic-boy-hate-letter-move-or-euthanize-him-full-text. 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.

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.

References

Bagenstos, S. (2013). “The case against the 14 ( c) subminimum wage program.” National Federation for the Blind. Retrieved from https://nfb.org/fair-wages#Issue

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

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.

References:

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.