Take a Second "Look"

Did you hear about this one? Evidently, a London employee of Abercrombie & Fitch was demoted once her bosses discovered she had a prosthetic arm. Apparently, this violates AF's "look" policy.

The employee is suing, thankfully, and she'll likely get whatever it is she asks for. This is discrimination in its most disgusting form. She doesn't look as someone else thinks she should, therefore she is relegated - Quasimodo style - to the stockroom, away from the prying eyes of the so-called beautiful people who frequent the store.

I don't shop AF. I'm not stick thin enough to squeeze into their clothes. But if you do, I hope this makes you want to stop shopping there. Full out boycott! Imagine if you wanted a job with AF but you use a chair or have a noticeable limp or some other visible disability. Do you think you would be hired?

This article lays out the terms of AF's "look" policy. Disabilities and prosthetic arms are not explicitly mentioned, but they clearly would violate the policy's lily-white terms. I find it ironic that the policy wants staff to express individuality, but that the other terms make that virtually impossible.

The doorway to the world of Abercrombie & Fitch is less admitting than the gates of Heaven to a rich man. It is beyond pathetic in this day and age that working retail comes with the same set of visual standards as being a movie star. Of course, an actress with a prosthetic arm probably wouldn't be shunted behind the scenes.

Fragile

I knew that reading Jodi Picoult's new novel, Handle With Care, would be a rough ride for me, but I didn't expect to begin shedding tears from practically the first page.

Handle With Care focuses on a family whose youngest daughter, Willow, is born with osteogenesis imperfecta (brittle bone disease). Picoult writes from the point of view of several of the main characters, but only from Willow's at the novel's end. While I understand the purpose of this technique - after all, this book is not really about Willow but about the lives she touches - I feel that Picoult missed out on dealing with what could have been a very interesting and complex character.

The book mainly focuses on a lawsuit that is central to the story and the disintegration of the central family from the points of view of the mother, father, elder daughter, mother's best friend and a lawyer. Readers must handle the emotions of these characters - especially the O'Keefe family - as they suffer with Willow through the course of over 70 broken bones in the course of her short life (she is 6 in the book).

What affected me most in reading this book is acutely recognizing the situations that Willow was in. The slightest twitch, an incident that wouldn't faze a "normal" child, is a devastation for her. I've been there. I've broken bones without even moving. I have spent months in body casts, propped up on pillows, desperate to be comfortable. I have watched my friends and family do things I could never even dream of attempting.

I have also gone beyond what anyone ever expected of me. I have not just broken but shattered barriers trying to keep me from having a normal life. I have proved myself intelligent, compassionate, loving and lovable, just as Willow does.

Picoult did an excellent job in expressing the emotions of Amelia, Willow's sister, who feels pushed by the wayside by her sister's disability. I most often cried when reading Amelia's perspective, because she put voice to the way I have often feared my younger sister felt about me. Yes, there is love, but there is also anger, resentment, a feeling of mattering less. Amelia's spiral into depression is a poignant look at what it means to be sibling to a child with a severe impairment.

What Picoult does masterfully in Handle With Care is raise questions that are difficult for us to face: What constitutes a life worth living? What does it mean to a family to have a member with a disability? How does it affect us? The worst - or perhaps best - thing is that these questions cannot really be answered. The definition of a worthy life is different in everyone's dictionary. Families are built differently, some able to handle more than others and more successfully.

It also made me look at my parents differently. If they had had the opportunity to know before my birth about my OI, would they have acted differently? My fear has always been that the answer would be "yes," but really I have no idea. By not writing from Willow's perspective, Picoult missed the opportunity to explore the psyche of the disabled child. I can only speak for myself, from my own experiences, but disabled children carry a lot of guilt. We wonder how our loved ones' lives would be different if we were different. Or, more specifically, not different.

We are well aware of the struggles our families face that they might not if we were "normal." Medical bills, mobility and adaptive equipment. And, non-monetarily, the stress of dealing with a child who has severe medical problems. The fissures that can appear in a marriage. No matter how young, children with disabilities are cognizant when that stress takes a toll. When the fights not about "you" are about "you." We know.

On the whole, Handle With Care is an intimate portrait of a family simultaneously drawn together and pulled asunder by having a member with a disability. It adeptly deals with emotions ranging from unconditional love to blinding anger to the sense of loss when life doesn't happen quite the way we plan.

Personally, I was disappointed by the ending, but can't argue that it was unrealistic. I recommend it, but if you are a parent of a child with a disability, have OI or have been close to anyone who does, I suggest reading with a box of tissues by your side.

Stand Up? Damn Strait!

I submitted this for publication in my local newspaper, but seeing as how I've received no response, here it is!

You know that saying, “The more people I meet, the more I like my dog?” After the George Strait concert on May 15^th, I have never liked my dogs more!

My sister and I attend a lot of concerts, but this was our first opportunity to see King George in person. It was an event we had been anticipating for months. It was supposed to be an exciting way to start off our summer concert season.

Instead of a great experience to cap off our eager waiting, neither of us can remember more than a handful of songs from Strait’s set, because every few minutes, someone was harassing my sister for standing up at her seat.

We purchased accessible seating in advance and were happy with our spots, even though they weren’t the seats we were used to (down near the stage). My sister is, to say the least, enthusiastic about music; it is her passion. She enjoys her concerts standing up. It is exciting for her, and it is her way of showing respect to an artist, particularly a great like George Strait.

Did she need to stand during the show? No, but does anyone need to stand during a concert? Of course not, but it’s part of the experience. Should someone further away from the stage be expected to forgo a part of the experience because of their seating? No, but the people behind us apparently thought she should.

If these people had approached us nicely, one time, about the fact that their view was somewhat impeded, my sister would have sat down after a few songs. She had planned on doing so anyway, because she is a nice person. But, no one approached us nicely. Their first interaction with us was to throw garbage at my sister. Only after that failed did someone approach us and, not politely request that she sit, but demand it. After that, they complained to five different members of the staff who told us the same thing: My sister was in the right. She was staying within her two-foot-square area and, so long as she did so, she could stand all night if she wanted.

Setting five staff members on us was beyond unnecessary. It was enraging. We don’t respond well to intimidation, these people’s weapon of choice. At one point, a “gentleman” said threateningly, “You’d better not,” which she decided to stand back up after briefly sitting. At the end of the show this same “gentleman” approached my sister and told her she was a “rude bitch.” Another person shoved the chair into the back of my sister’s legs. Silly me; I thought I left high school 10 years ago.

With every fiber of my being I believe, if roles had been reversed and they had been blocking my view, they would have asserted their right to stand in their seats, my problem be damned. My sister is no stranger to the abuse that I am sometimes forced to suffer, so she does her best to be considerate while having fun. She does not bop around like a drunken fool; she does not throw her hands over her head and flail side to side. She compresses herself into as small a package as she is able, while still having her own fun. Had there been a legitimate reason that these people were forced to sit, she would have made a concession. But these people just wanted something to complain about and someone to blame for the fact that their night was ruined.

Their night was ruined because they sought out a way to ruin it. Rather than try and make do with the hand they had been dealt, they spent the night complaining about it. In similar situations, I have been informed that the staff could do nothing to help me and I just had to deal with it. So I did. Annoying, yes, but no reason to miss out on one of the greatest performers of our time.

Someone is bound to say, “She should have just sat down. There was no reason for her not to.” There was no reason to have things thrown at her, be threatened and called names either, but that’s what happened. I’m not sure where these people expected such abuse to get them, but it only made us more determined not to give in to their demands.

What can I say? We’re stubborn.

The Bucket List, Revisited

As I'm a few weeks away from my 28th birthday, I thought it would be a good time to do some updating. Still lots to do. Check out the original here.

• Be an inspiration.
• Make a difference, an impact, change the world.
  
• Get a tattoo.
• Write a good book. (The quantifier is necessary, because, strictly speaking, I've written a book, meaning a book-length story with a beginning, middle and end, but it is not good.)
• Publish a book.
• Make someone's day.
• Visit London.
• Visit Paris.
• Fall in love and be loved in return.
  
• Visit Australia.
• Figure out what makes someone a true friend.
• Be a true friend.
  
• Know my own worth.
• Learn to play guitar. (Really. I know a handful of chords now and can totally rock Kumbaya.)
  
• Rediscover what I am passionate about.
• Be a good mother. (Maybe. I'm still uncertain on motherhood.)
• Visit Amherst, home of Emily Dickinson.
• Read as many good books as I possibly can.
• Be spontaneous. (This is going to be a toughie.)
• Learn patience.
• Own a candy-apple red Mustang convertible.
• Be kissed, and often, by someone who knows how. (Thank you, Rhett Butler.)
  

I'll probably add to this list and hopefully I'll be able to scratch stuff off. Some of these I may never accomplish. Some I may accomplish without knowing it. But I'm going to try them all.

What If I'm Not There?

Here's a question: What do people lean on if I'm not there? Where do they rest their beers? What do they use to haul their drunk selves up from the floor? Do their beers just hang in midair? Maybe they just stay on the floor all night.

It is so frustrating in crowded situations to suddenly feel my chair lean to one side because someone has decided I'm there for his comfort. No person in his right mind would consider doing something similar to a person who wasn't using a chair. You never see anyone resting a beer on the shoulder of a stranger. No one props their weight on another person without being intimately connected in some way. Or, at the very least, totally wasted.

But, if I'm there, it's like everyone has his or her own personal handrail/table/leverage system. I have even had another chair user use my chair to haul himself to his feet. That is, in my opinion, the height of bad etiquette. I can't be the only one this strikes as completely wrong. Surely this guy doesn't enjoy when others use his chair for their own reasons, so why on earth would he do the same to a fellow chair user?

Oh, and I once had someone ask if she could hang her cane on my handlebars. So, apparently, I'm also a coat rack.

I've often compared my chair to essentially being a piece of furniture to emphasize how unimportant it is when getting to know me, the person. However, it is still my furniture. My occupied furniture. The only person's comfort I'm concerned with is my own.

The worst part is, there is almost nothing I can do about it. Sure, I can nonchalantly reach my arm back, to rest on the back of my chair, thereby knocking away the hand that is annoying me. But, I can't sit like that for hours on end. Lately, I've taken to discreetly disengaging my brakes and rolling in whichever direction is best suited to dislodging the offender. Unfortunately, nine times out of 10, the person is so oblivious to the fact that I'm a person, he doesn't even realize I've moved, let alone that he is the reason I've done so.

I have as little respect for these individuals as they have for me. So, if anyone knows how to rig a small electrical charge to wheelchair push handles, I'm all ears.

I Vote Yes

President Obama has made a lot of news since his inauguration. He's pleased many people and pissed an equal number off. Due to the current state of the economy and the president's stimulus plan, his decision to revoke George W. Bush's ban on stem cell research kind of flew under the radar. It made the news, but I personally didn't see a whole lot of reaction, negative or other wise, aside from a handful of comments arguing over when a collection of cells becomes a person.

That's really not an argument for science to make. Religion can make the best guess, but it is still a guess. No one knows. For all we know a soul may not enter a body until the moment a child emerges from the womb or each individual egg and sperm may contain a different soul. So the arrival of a soul in a human body isn't worth arguing about. We simply don't know and likely never will.

I also find those who are against embryonic stem cell research to be hypocrites. If this kind of research could guarantee a cure for their families or friends, they would be all over it. It reminds me of anti-abortionists who blow up abortion clinics. They are against abortions because they consider abortions murder, but they are perfectly willing to kill doctors, patients and innocent bystanders? Is there any kind of logic in this? Because I don't see it.

I am all for stem cell research. The reality is that this research could potentially solve a lot of medical mysteries. AIDS, cancer, paralysis, and any number of other problems. I could possibly look forward to a future when children would not be born with OI. My life has been great, but I would not want this disease visited upon anyone. I am already afraid that when I fall in love and the time comes for children, the 50 percent chance of my passing on this gene will become 100 percent. I am not strong enough to bear watching a child go through some of what I did. I don't know how my parents managed.

Good call, President Obama. Stem cells could be a major breakthrough in the medical industry. It might even save a hypocrite's life.

QPQ P2

I am back at last with the (not so) highly anticipated continuation of my "review" of Quid Pro Quo. See Part 1 here.

This time around I'll be dealing with Isaac's romantic situation, as it stands at the beginning of the film. Alas, he's single, but a female colleague is determined to set him up with one of her friends. Because she can see past Isaac's disability to the wonderful person he really is, she has no doubt that her friend will be able to do the same and continually brushes off Isaac's request that she fill her friend in on his situation.

Fast forward to the night of the blind date. Isaac sits at a table in a nice restaurant. In the foreground, an attractive woman stands at the bar, quite obviously his date. As Isaac informs the waiter that he is meeting someone and gives the woman's name, we see her eyes widen with surprise. She turns and...runs. She leaves the restaurant without so much as an introduction to Isaac. When he catches her eye through the window as she is about to get into a cab, she gives what Isaac terms a "someday I'll be a better person" shrug. Somehow, I doubt it.

Now, of course, Isaac takes all this in stride and has dinner solo. Personally, I would be devastated, practically ashamed to show my face in that establishment ever again. I would rush home, eat as much junk food as I could find, meanwhile berating said "date", said "friend" and myself, mostly for being pathetic enough to think that someone could sit down and have dinner with someone they don't know, and look past a difference that is quite obvious.

But, that's just me.

So, who's at fault here? Not Isaac. Not even the date, really, although we'll get to her in a moment. No, the problem started with the friend. Isaac repeatedly told her that she needed to inform her friend that he used a chair. Repeatedly. Obviously, this was something that Isaac wanted her to know, that he thought was important for her to know. And she refused to impart that bit of information.

So, I say this to all my friends: I would love to be set up. Seriously. But, TELL HIM about the chair. Preferably before you even mention him to me. It's one thing to be rejected; it's entirely another to be rejected by someone you've never even met. Why tell him about the chair? One, so I can avoid that tragic deer-in-the-headlights surprised look when we meet. Two, so I can really avoid being Isaac and forced to dine alone. Frankly, it's just good common sense. If there is something about the blind date you've set your friend up on that is going to take him/her aback, it's a good idea to tell them ahead of time. Give your friend time to marinate on it; digest it; deal with it; decide whether or not they are a big enough person to handle something like that (whether it be a disability or something else).

So, let's get to the blind date, shall we? How pathetic is she? She is set up on this date, goes to all the trouble of getting pretty and going to the restaurant, only to bail when she finds out her date uses a wheelchair. What does she think is going to happen if she just has dinner with him? Does she believe he is so pitiful that he will think that one dinner means they're engaged? Is he going to pop out a ring when dessert comes? Be serious: of course not. What does it hurt to have dinner with the guy? You're not leading him on. You're under no obligation to see him again. Hell, it's a free meal! But, no, this woman is so superficial, so lame that she can't even stomach the thought of being seen with someone who has a disability for a couple of hours. She can't bring herself to have a conversation with him because her own ideas about who or what he is get in her way. She gave up on meeting someone intelligent, kind and funny, sure, but there's another consideration here. What if she just walked away from her One True Love because he used a chair? What has she denied herself by turning tail and bolting?

I don't believe that the majority of people are like this woman. But, the fact that her character has a place in the film means that there are people like that in the world. We all know that already, because we've all had to deal with them at one time or another. Those people who are so afraid to open themselves up to a new experience that they deny themselves any experience at all.

I've taken a lot of emotional risks in my search for love. Many of them stupid, most of them caused me pain. Even though I may not look fondly back at those risks, at least I took a chance. Why? Because despite incontrovertible evidence to the lack of its existence, I believe in Love. I believe its out there. I just have to find it.