Fun Over Function: "The Special Needs Gift Guide" and Learning That Life Isn't All About Therapy

I’m back after a short hiatus and it’s that time of the season. Yes, the holidays are here! The snow is falling, my friends and I are trying not to fall, and the temptation to spend my entire SSI check on chocolates and holiday greeting cards is ever growing. After another year, the media has still failed to recognize that Rudolph was a victim of blatant disability discrimination, followed by shameless exploitation. I’ll have to wait until next year for that tell all TV special, but as sure as an overplayed Christmas song, a holiday classic has returned. Not sure which I mean? Of course I’m talking about the “special needs gift catalog”. This annual bundle of joy pops up all over the Internet, eager to make even a toy for a kid in a wheelchair criminally overpriced. Because that little piece of Velcro triples its cost, and requires the insight of a specialist, right? While they are very well intentioned, these special needs toy catalogs don’t make me feel very in the spirit.

While some of us may need something adapted, and it would be wholly impractical to buy me a Pogo stick, I don’t think our holiday interests are so outside the “norm” that they merit entire “special catalogs” and articles declaring what a “special” task buying gifts for us is.

According to one such article, “finding the perfect gift for a child with special needs is rarely as easy as popping down to the toy store, picking an age-appropriate gift, and wrapping it up.” Um. Because our wheelchairs and walkers and crutches (oh my!) must surely negate our interest in music, movies, and new clothes, right? These articles, written by “experts” of course, seem to be under the impression that while other people look forward to a very merry and bright season, we disabled folks must be seeking a very merry and therapeutic season.

While I adore all of my doctors and therapists, I think I speak for the vast majority of us when I say we’re thinking more about how many cookies would be remotely acceptable to eat at once than about the therapeutic value of our gifts. The famed "Toys R Us Gift Guide for Differently Abled Kids" (excuse me, while I gag on the euphemism), while well intentioned indeed, even goes so far as to classify each toy according to the corresponding developmental skill. Therapy can be important, it can help us do things we couldn’t do before, hell, it can give help us meet a best friend in the waiting room, but come on, people! Must even our fun be classified according to the developmental milestones we didn’t quite make? I thank my lucky stars this season that my mom and dad never used Christmas as an undercover therapy session, and that they never raced to the “gross motor skills” section of the catalog to fill my stocking. Perhaps they got the message that any attempt to develop my motor skills on Christmas morning instead of letting me just have fun was the equivalent of getting a lump of coal. Or maybe they noticed that trying to link together a Barrel of Monkeys with my palsy hands would make me feel like I landed on the naughty list. I realize that some disabilities make certain toys frustrating. Finding a toy or a gift that avoids frustration is a very worthy goal. But as a person with a lifelong disability, I encourage you to remember that “not frustrating” is not synonymous with therapeutic.

 It certainly would have broken my spirit as a kiddie if my sisters got to tear open their presents to be met by comments about how fun they looked while my presents were declared to “be good for my motor skills”.  One thing glaringly absent from these “special catalogs” is a review of how fun each toy is. I can’t recall a single kid who tore open a gift beneath the tree and shouted, “This will be so great for sensory integration!” I’ve never seen a depiction of Santa in which his bag is overflowing with Theraputty or obscenely priced adapted forks. Another special needs gift guide classifies items by "therapist picks" Again, I love PTs and OTs with all my heart, but where are the top picks from the kids who have to play with the toys?

Disability does not negate the need for fun, the need to do something mindless, the need to be just a kid. While I would be overjoyed at the production of wheelchair shaped “slice and bake” cookies, at the end of the day, I’m just a person, and especially as a child, all I wanted to do at Christmastime was have fun. I know when you have a kid with a disability, there is constant pressure to “do something” and it’s easy to get wrapped up in the therapy craze.

 But as someone who has had many years to learn the truth, I can tell you this. I remember very little about developing my hand- eye coordination or practicing my dynamic sitting balance. I don’t recall that bottle of Play-Doh and think to myself, “Fond memories of improving my motor skills!” I do remember, with great joy, being given a childhood in which fun did not always have to be paired with a functional skill. In between the appointments and the IEP “progress notes." sometimes it’s OK to skip therapy and get ice cream. Sometimes it’s OK to say, “Today I did ZILCH to address my left sided weakness. Today I lived… and it was awesome.” So, if you really want to know how to buy the perfect gift for disabled kids, there aren’t too many special rules. Think about what they like. What makes them happy. What looks like fun. What would make them believe in magic. Chances are, you can toss aside that occupational therapy catalog and buy a copy of that album all the kids are listening to. Because perhaps the magic of waking up on Christmas morning, or tearing open your Hanukkah gift is that you can be a kid, who in that moment, doesn’t have to give a crap about therapy.

I Know I'm A Person. Thanks for the Reminder!: The Problem with Obligatory Person First Language

Growing up as a disabled person, I am keenly aware of the ongoing debate in the disability community about language. In fact, the sentence I’m about to type may cause a few people to cringe. I am disabled. Yep, I said it. And I’m not going to take it back. This phrase has caused many people over time to scold me that I am a person with disability. It’s not that I find the term people with disabilities offensive, but I do find its compulsory use to be. I tend to use these terms interchangeably, in fact. But the societal insistence on “person first” language has to stop. People have the right to identify as they choose. Period. Don’t tell me what to call myself. Your training, degree, and lengthy observations about “people like me” do not trump my insight about my own experience. In addition, the “person first” obligation as an unbreakable rule implies that unlike other identifying adjectives, disabled is inherently negative. Think about it. No one would judge me if I chose to say, “I am a woman” or “I am an American” because we have been raised to view these words with a neutral connotation. Disabled, on the other hand, because of the pity, fear, and misunderstanding surrounding our community, is ingrained in our collective mental lexicon with a built in negative connotation, an unspeakable adjective so assumed to be associated with misery that the people it describes have been stripped of their right to use it by people far outside our lived experience.

 I am not afraid to call myself disabled, because to me, there is no shame in using it. It doesn’t mean bad. It doesn’t mean ugly. It doesn’t mean all the unspoken undesirable things you’ve been taught. The logistics, discrimination, and social barriers living with my disability has come with are challenging, but they are part of the person I am and the person I will be. Disabled is just one of the things I am. I am not saying it is my entire definition, but it is part of my definition. Don’t tell me I would be the same person I am if it went away or never existed, because the people and experience it has given me have built me. They are not empty things without value. Not every single moment of a disabled life is profound, earth shattering, or worthy of a term paper. Sometimes, my moments are just regular, but they are mine. I would not be the same person had I never met my wonderful physical therapists and doctors. If I hadn’t been dragged to hours of physical therapy, some of my best friends may never have met me.

 I wouldn’t have my memories of summer camp, or know the feeling of the buzz of my wheelchair in motion through my feet. I would not be the same “me” that I am today, and when I think of all the people who would never have graced my path, picturing another reality seems so sad. When I think of the word disabled, I sometimes think of annoying things like surgeries and my braces getting too hot in the summer, but the good things outnumber the bad ones that come to mind. Certainly, when one of identifies as a woman, not everything associated with being one triggers happy, positive thoughts. Especially not when she is crying along with the particularly touching peanut butter commercial at a certain time of the month. But in identifying as a woman, she does not summon the political correctness police, who advise her that she is a PERSON and quickly correct her statement to “a person who identifies as a woman"while ensuring that their children did not hear the word “woman”.Of course, there are sexist assumptions about women, but no compulsory linguistic pressure to identify as a person first.

Then why are disabled people asked, even forced, to separate from their disabilities in everyday speech as if embracing them, or merely acknowledging them relegates us to a big, smelly pack of undesirables? My disability is part of me, and I refuse to treat it as something that must be overlooked in order for one to be seen as a person. My disability is infused in my person, not an ugly outgrowth that must remain next to my person.

To all the people who have argued with me not to call myself disabled because “I am a person first”, my answer is this. I know. Of course I am. Why would putting disabled in front of that negate my personhood? Just like every other human being’s, my personhood should be implied. If I say disabled, will you suddenly forget that I’m a person? If I have to emphasize my personhood every time I speak about myself, it doesn’t mean I am being “inclusive” and “correct”. It means that our language implies that without proper emphasis, my personhood is in doubt. Furthermore, if I am a “person first”, then so is everyone else. If the intent is really to honor and respect people, then theoretically, members of every group should be prancing around being sure that everyone knows he or she is, in fact, a person. If we really want to follow the person-centered logic, then where are the flyers about the “people who are gay” or “people who live in America”? It seems that other groups have been allowed to take their personhood for granted, and so “person first” language seems unnecessary and cumbersome. If the concept of personhood were so important, every demographic group would be organizing “a person pride parade” that could really be one giant parade because we’re all people, right? If personhood needed so much regular emphasis, we’d be hosting ally trainings for the family dog. The thing is, for most of us, society “just knows” that personhood is there. It only needs to be underlined and announced if it’s somehow in question. Perhaps we should be asking ourselves why the disability community has been so dehumanized that our personhood is required to be broadcast on a megaphone every time we talk about ourselves.

 Other groups do not have to send a constant reminder that they are people. Those completely outside of their demographic do not treat their adjectives as if they will make those they describe no longer sufficiently human. There is no insinuated stain attached to them, or a pressure to loudly and proudly announce one’s personhood before it disappears. I do not judge proponents of person first or seek to force identity first language on anyone who dislikes it. You can keep using people with disabilities if it makes you happy. That’s the beauty of choice. That’s what makes an identity. But please, do not tell me what I am, or act like my personhood will be obscured if it precedes the word person in a sentence or two. I am so confident that I am a person, not a puppy, a kitten, or a pig, that I will continue to treat my personhood as an assumed trait, always at my side, even if it is sometimes undeclared. Next time you remind me that I am a person first; I would like to say “Thanks. I thought so. What made you think otherwise?” and then remind him or her that she is a person too, in case there were any doubts.

It's Your Job Too: Dismantling the Myth of Specialness and Making Inclusion a Community Responsibility

Since the time I was very young, society instilled in me the idea that as a disabled person, my needs were “special”. Special services. Special chairs. Special surgery. Special programs. And since that time, something about the word in that context always rubbed me the wrong way. As a little kid, I could not articulate why, but years of life and many more “specials” have helped me find the words. The disability specific services and programs I have participated in over the years are indeed special, but not because they were for people with disabilities or because I came from some far away incomprehensible planet. They are special because they filled my life with people and experiences that made me a better person. Classifying a disabled person’s needs as “special” is definitely well intentioned, but it has a negative impact on policy and the every day effort to end ableism.

Calling our needs special isolates them from the rest of human needs, and in the process shrouds them from the body of general knowledge. When needs become special, they are tucked away in special departments run by special people who specialize in specialness. Disability becomes its own hidden corner of the universe as it is implied that only those with a related job or a family member with a disability should ever bother to explore the issues that come with living a disabled existence. The responsibility to learn about and be aware of our lives is seemingly confined to the world of specialists and people who “have experience with those kind of people”.

Because of this discourse, the responsibility of people outside of the direct disability community to include and think seriously about access issues is shifted away based on the belief that "special services" will deal with it. This discourse operates on the belief that every day people don't have a stake in such affairs because somebody with "disability" in their title will take care of it. I have been disabled for my whole life and I have news for you. Inclusion and access is everyone's business. We are part of your schools, workplaces, stores, hospitals, and communities, and this is a justice issue. The issues at hand are really basic human rights and basic advice about how to treat other people with respect and dignity. You don't need to be a specialist to do that, so if you thought disability issues were only meant to be handled by so-called professionals, nurses, doctors, and people who have earned special certificates, then you have lost understanding of what a community means.  In a community, everyone is included. Yes, there are some ways we need certain things adapted that require a certain learning curve and a little bit of extra time, but at the end of the day our needs are just some among many, and to be honest, there's nothing particularly special about them. We need to eat, sleep, get dressed, bathe, go to the bathroom, breathe, and a whole bunch of other painfully ordinary things.

The way in which we accomplish these tasks may not be typical, but the needs themselves are not so special, and when we stop thinking of them this way, we invite the entire community, and not just a select few deemed worthy to give a damn, to meet them. Just like different customers at a business have different requests, we might need some things adapted differently for us. In a marketing context, meeting different customer expectations is considered part of being innovative and stepping up to the plate. Why can't we think of accommodating people with disabilities in everyday life according to the same logic? It doesn't take special training to do the right thing and if you're not sure how to make something inclusive, go ahead and ask a person with a disability. Authentic inclusion is bound to fail if the only ones viewed as responsible for implementing it have fancy titles.

Sometimes, all the specialization and "othering"makes people who want to be involved in including us believe they are not qualified to do so. I can't tell you how many times people have had a chance to be more accommodating and they have shrunk away from the opportunity because “doesn't somebody from disability services take care of that?” Yes, they do. Disability services and trained professionals definitely have their places, but so many inclusive actions are simple and do not require some special academically bestowed insight. If you're not sure how to be inclusive, just ask a person with a disability, and you'll probably realize that we’re just people.

Come behind the veil that has been constructed around us. We're just people and because of that, you should take an interest in our rights too. The myth of specialness creates adapted utensils that cost hundreds of dollars, when the secret "special" insight is probably a curved handle or a piece of foam. The myth of specialness fills catalogs with wildly overpriced items like the adapted umbrella that really is just an umbrella with a clip on it to attach to a wheelchair.  As soon as the word "wheelchair" enters the conversation, it's like the price inflation button has been pressed. The cost triples in deference to these perceived specialists, who honestly did not need a pricey special insight bestowed by academia, but probably just needed some creativity and design sense to make that umbrella. The myth of specialness makes power wheelchairs constructed from foam, leather, metal, and plastic cost thirty thousand dollars. The things we need may be a bit atypical, but it's time we incorporated them as a part of meeting consumer and human demands, and not as the brainchild of super specialists cloistered away in their own professional universe.

The myth of specialness makes people think it's not their job to build ramps, wheelchair accessible tables, or automatic doors, because some "special person" or regulation enforcer will take care of it. Newsflash: installing all of these features is not only the right thing to do, but also plain good business sense. Like I mentioned before, I need to eat (Oooooh special!) and if I can't open the door to your restaurant I’ll go eat somewhere else instead. As someone with no cooking skills and a strained relationship with dining hall food, I am quite a loyal customer, so your lack of automatic door is not only a disappointment for me, but also a tragedy for your earnings!

I am not arguing that there are no tasks related to disability that require training, but the fact is most of them don't. Common sense can go a long way, and so many of our needs may not even be related to our disabilities. The walls created by the myth of specialness give birth to “special toy” catalogs for “special kids”, as if the general market has no responsibility to include accessible toys in their catalogs. Disability specific publications have their place and I love rooting through the Sammons Preston rehab catalog as much as the next girl, but items we can use belong in the Macy's catalog, the Toys "R" Us catalog, the popular clothing stores, and the local restaurants as much as they do in any disability specific catalog. Then, we wouldn't have to venture to shadowy corners of the Internet looking for pocketbooks we can actually put on our wheelchairs and jeans that actually fit over are braces. Our mothers wouldn't have to traverse the area looking for suitable socks to wear with braces, and call each other in excitement when something finally looks like it might work. Because things we can use would just be there, much like how we are just there in the world and are not from some alien planet. We do not only exist in mythical special places, but sometimes it feels like we do when we can only get in to half the businesses on the block. I've probably been next to you in the ice cream shop and despite your speculations; my ice cream did not have special ingredients to sustain me until I return to my special spaceship.

Unfortunately, the myth of specialness puts up social barriers too, because it can perpetuate the belief that you need to be some kind of specialist or trained individual to even be with us. It need not always be in a therapeutic, research, or volunteer setting if you want to spend time with me. People with disabilities are real people and sometimes we want people to just be with us, no strings attached, no special training required. Anything you're curious about you will probably learn over time just from being with me, much like the young children on my block, who have grown up with an intuitive sense of inclusion just because we grew up together. I am one of your kind too. You can leave your special education textbook behind.

The myth of specialness spreads the belief that only the trained can help us. You can still hold the door for me. You can still pick up my phone. You can still do all the things for me that you would do for an able-bodied person as a good deed and not as a specialized task. People are so trained to see me as someone with a special assistant that there is sometimes a reluctance to act because it is perceived that my aide will just do it. For example, in junior high, when I still had a one-to-one aide, many of the kids would not bother to help me move my desk because they would just wait for my aide to do it. When I no longer had a one-to-one aide, the veil was lifted and gasp, nothing exploded if an untrained peer moved the desk or picked up my pencil.

My needs became part of the day-to-day goings-on in the classroom, no longer restricted to those deemed specially trained. It is true that not just any random person in my high school could help me with everything. I did rely on a nurse to use the bathroom, but my point is most of the things I needed were easily accomplished with a little effort from the people around me. And even my going to the bathroom was in itself not a special need. In case you haven't been told, everybody pees and prefers if you remember to button their pants when they're done. I may have needed someone to help me, but the task was accomplished in a way that it was integrated into the body of student needs. I was not trapped in the box of a one- to-one aide as the only solution, because I didn't need to be. Because when all people give a damn and not just a select few designated to do so, our thinking expands. I am so thankful for all of the people who have allowed their thinking to expand so that I could thrive.

When special needs become just needs, we will live in a world where children with disabilities are not routinely excluded from activities because lack of experience with "special populations" is used as an excuse. We will live in a world where fifth-grade wheelchair etiquette no longer suffices as a proper exploration of disability as a diverse group. We will live in a world where disability awareness events as the opportunity to hear the perspectives of disabled leaders not restricted to National Disability Awareness Month. We will live in a world where four-year-olds with Down Syndrome can have their birthday parties wherever they like because society recognizes that you don't need special training to play with a kid and make him feel awesome on his birthday. See article here. We will be seen as customers, friends, family, and coworkers, not liabilities.

The damage of the myth of specialness was very well exemplified by a recent experience I had at a campus McDonald's. A bystander stopped to help me grab my food and set the bag on my lap so I could carry it home for my friends. The clerk immediately assumed that the person was my paid assistant and began to hand my change to him. She seemed somewhat surprised that he was just a person helping another person. The fact that this was beyond the realm of her imagination says a lot about our society’s reluctance to see disability access as a shared responsibility. So next time you see someone helping me, it might be my employed personal assistant. But it also might be my friend, or my sister, or a person passing by. You don't need to be employed by the Department of Human Services to give a damn about my needs. Chances are, my needs are really similar to yours.

As disappointing as it may be, we're not so " special" after all. (Cartoon credit: Crippen Cartoons at http://www.crippencartoons.co.uk/wp-content/themes/elegance/lib/scripts/timthumb/thumb.php?src=http://www.crippencartoons.co.uk/wp-content/uploads/2014/08/Feet-and-Mouth-2001-Custom.gif&w=660&h=467&zc=1&q=100 )

Image: A presumably able-bodied man at an art museum with a sign that says Handicapped Feet and Mouth painters. A short-statured, presumably disabled artist gives the man a painting with very "typical looking" footprints. Disappointed at its similarity to so called "normal" paintings, the museum staff member says: This isn't quite what we had in mind. Cartoon also pokes fun at the event's title. The disabled artist has literally painted feet, rather than indulging the museum's desire to "other him" because he paints using his feet.

*Thanks Ellen at Love That Max for bringing my attention to the news story about the gymnastics party.