The Big Apple: only thing rolling in NYC

Here’s the deal. Places all over the world are making changes to make it easier for disabled travelers to visit. The London transit system’s accessibility has gotten a lot of praise. Europe is coming together in a universal system for disabled drivers–regardless of their citizenship!  Cities are starting accessible programs like making their beaches wheelchair accessible, like in Italy and Brazil! But here in the US, after just celebrating 23 years of the American Disabilities Act, you can still find news articles like this….

NYC TaxisNew York City has 233 accessible taxis, out of a fleet of 13,000.

There was a bill signed by Gov. Cuomo a year an a half ago to add 2,000 new accessible taxis to this fleet. This victory was short lived as this state law was ultimately deemed unconstitutional by New York court. The reason? Because the city should be able to make these sorts of decisions.

Now the fate of accessible taxis lays in the hands of Mayor Bloomberg, who supported the court’s ruling. Bloomberg predictably chose to revert to the previous strategy: a dispatch program that sends the 233 existing accessible to callers familiar with the program.

What makes this particularly upsetting is that when this measure (Intro #433-A) was first passed at the state level, it was supported by a “veto-proof majority of Council members”. THEN Mayor Bloomberg, represented by a Taxi and Limousine Commissioner spokesperson (David Yassky), opposed the bill. Guess who won.

It is simply outrageous! Regardless of the issue. If Measure 433-A said I couldn’t eat Oreos with milk and this same situation happened, I’d still be furious. (Even if the end result meant that I could continue to consume the cookie in it’s greatest glory: dunked in “liquid gold”.) And that is because the will of the majority was overpowered by the personal agendas of powerful folk.

Despite this outcome, the United Spinal Association deserves much recognition for their contribution to this battle. If there is one thing that can beat powerful folk, it’s persistent folk on the right side of the issue.

I think this disappointing news gives a very good picture of why they call it the city that never sleeps. You stay up half the night waiting for a taxi, and by the time you get home, you have to phone the dispatch immediately if you have any hopes of getting to your appointments on time. No time to sleep on a system like that.

What do you think?

oreo controversies

Let’s face it, Oreo likes to keep it’s fingers in many glasses of milk, so to speak. They’ve somehow entered in just about every controversial issue out there! I’m happy to pull them into one more…

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It’s an odd gift but it’s a gift

I started writing Controversy Humpday so I could share stories that I’d otherwise find very difficult to share, but that are extremely important and worth sharing! Today is particularly difficult; I hope every one feels they can chime in with their opinions in the comments and that these controversial stories can become somewhat cathartic.

Baby with Down Syndrome thrown from bridgeIn 2000,  mother dropped her baby, Kaya, from a bridge  45 meters in the air. After reading this, I was overwhelmed and probably too upset to write a coherent article. I realized I would never be able to find better words than this spectacularly gifted author, in her letter to the fallen baby:

Dear Baby Kaya,

When I read about your fall in the newspaper, my heart hurt. I know that the police are still trying to find out if your mother dropped you or if you were tossed over the guardrail.

But, in many ways it doesn’t matter. The fact is, as soon as people knew you had Down Syndrome, that changed the story. Now there was a reason for you to be thrown away: you are a baby who doesn’t really matter.

There are two things you need to learn. First, you come from a group of people who have a history of being thrown away. We have been thrown out of families into institutions. We have been thrown out of schools into special classes. We have been thrown out of lives of employment into lives of poverty. And people like you and me, doctors don’t really want us to be here in the first place. But we, people with disabilities, are glad you are here and welcome you to the fight.

And I, a woman with Down Syndrome, want to be the first to give you the second bit of news. Yes, you come from people who have a history of being thrown away, but you also come from a group of people who have learned how to survive.

I am a self advocate, that means that I have learned to speak up for myself and speak out against injustice. I take this seriously. There are some things that I learned that I want to pass along to you, things that I wish someone had told me when I was a little girl.

So, from me to you …

Be proud of who you are. Having Down Syndrome is kind of cool. I think we have beautiful eyes. Everyone tells me that we have the greatest smiles, and I think they are right. Being proud will help you in so many ways. It will insure that you ‘land softly’ every time someone treats you badly or calls you a name. You will hear them all, Retard, Reject, Dummy. I’ve heard them and really don’t care what people who use those words think. They may think I’m Retarded, but I know they are prejudiced.

Don’t listen to people who say you can’t do things. All sorts of people told me that I couldn’t learn. Guess what. I went to college, right along with typical students and I passed the same courses that they did. Oh, I had to sit up real late at night and study. I knew it was harder for me to learn, but I did it.

I can read. I can write. I can think. I can speak. There are more things that I can do than things I can’t. Just remember, don’t give up on yourself because someone says you can’t do something. Try it. You may surprise yourself.

I really hope this was all an accident and you will know a mother’s love like I have, but if not, there are lots of places where you an find love and acceptance. Find people who love you for who you are. Spend time with people who like you because of who you are. You will get tired from always having to teach people that you are a real person like everyone else. So find other people you can just have fun with.

I go to People First and other places where there are other people who have disabilities –you wouldn’t believe the fun we have and the things we get up to. In my groups I’ve met other people with disabilities who are married, who have full-time jobs, who own their own homes, who decide their own fates. It’s fun just to be part of the group. It’s a relief from being special.

Discover!! Life is fun and full of surprises. You know, I never kissed a guy until I was twenty!! But I discovered I liked it.

Life is full of great things, like first kisses and chocolate. Every day I sit down and enjoy strong coffee, real strong coffee, with milk and sugar. When I treat myself, I eat seedless grapes, cold and green.

You too, have lots to look forward to. I remember my first crush –on an older man. I remember playing races with my parents. I remember swings and slides and skipping and jumping. I remember playing with a puppy and rubbing his belly. Enjoy it all. Life is full of trials, but it’s also full of excitement, and fun, and green grapes and chocolate.

I read in the paper (that part still surprises people) that you are a ‘miracle baby,’ that maybe God caught you and carried you safely down from that bridge to the earth.

I believe, Kaya, that God gave me an extra chromosome. It’s an odd gift, but it’s a gift. I believe that God does love you. And, I hope you realize, so do I.

Welcome, dear baby, welcome.

Thank you Astra Milberg for finding the words no one else could and for giving baby Kaya the welcome and love she deserves.

Cetaceans: the new human

There’s some big news out there for water-dwelling creatures! Dolphins and whales have human advocates at work to draw up a Declaration of Rights for Cetaceans (2010) which states:

Every individual cetacean has the right to life… no cetacean should be held in captivity or servitude, be subject to cruel treatment, or be removed from their natural environment…no cetacean is the property of any state, corporation, human group or individual.

This Declaration has already been accepted in India and in Toshima (an island in Japan) where dolphins have all the above legal rights, under the title of “non human persons”. You have to admit this is a pretty big deal. Their “citizenship” is predicated on a few important factors.

We’re saying the science has shown that individuality, consciousness and self-awareness are no longer unique human properties. — Tom White

For a detailed review of how dolphins and whales have proven they do have each of these factors, read here.

While this news is kind of cool, it does raise some questions. For example, should chimpanzees have citizenship? What about dogs? These animals often work as service animals and in movies… Under this declaration, will the saying “Nothing’s certain but death and taxes” apply to all citizens?

While many a scientist is arguing for cetacean rights, I’d like to add my piece. In a 2011 study of Sperm Whales, scientists found a pod that had adopted a disabled bottlenose dolphin. The deformed dolphin was well integrated and accepted in the pod.

Sperm whales adopt deformed dophinOver eight days of observation, the biologists observed the adult dolphin swimming, feeding, and even nuzzling along with the sperm whale behemoths. “It really looked like they had accepted the dolphin for whatever reason. They were being very sociable.” says Alexander Wilson

Dolphins and whales didn’t need the American Disability Act or other legislation to make them treat their disabled peers well. They didn’t need the stigma of animal cruelty or associated penalties to generously open their family to another species. They reap no branding or PR benefit by this case of charity.

So my question is… what makes us so special that we deserve to be in the same category as these “non-human persons”? Should we idealize humanity or cetaceanity?

BYOR: Bring your own ramp

In Brazil, a paraplegic man was left to his own devices when city officials repeatedly ignored his request to make the town hall wheelchair accessible.

Samuel Nobile de Oliveira (Paraplegic) builds wheelchair ramp in Brazil

Here you can see Samuel Nobile de Oliveira making his OWN ramp on his day off.

While this image is moving in that a man with a disability is literally left on his butt by his city. He is alone and Mr. (or Ms.) Green Shorts is just standing by not helping.

The town mayor said “I apologize to all disabled by the situations and constraints… We will take appropriate action in the city so this does not happen anymore.” Oddly, this does not reassure me.

I do have to give great credit to Samuel for taking initiative while simultaneously putting every able-bodied city official to shame. He did not accept the status quo and challenged those who tried to prove otherwise — what an inspiration!

Accessibility is a right–in public buildings above all–and he did his city a great service by enforcing that right. I’m glad the media caught on to his rather heroic stand and that his actions will help others defend their rights.

Read more here.

The funny thing about having an incurable disease

The funny thing about having an incurable disease is that I accept and believe there is no cure. It’s no wonder I’ve never considered being part of a clinical trial before–if there is no cure, they can’t find it.

Further, I don’t kid myself that clinical trials require anything less than really hard (painful and embarrassing) work. Not to brag, but I’m confident that a good 90% of the non-crohnie population would be mortified if they had to answer my routine doctorly questions–let’s not even talk about the doctor’s office gymnastics. It’s hard to imagine what else they could throw at you for a clinical trial for Crohn’s Disease.

There is a love/hate relationship with clinical trials. I think it’s harder for family to accept something bad and they will always look for hope, while patients learn to accept and move on.

More than the honest belief my condition is incurable; I don’t want to get my hopes up for no good reason. It makes you start doing silly things like imagine what you would be doing if you were healthy and whole. What your life would be like. I’m pretty sure that’s illegal; I vaguely remember something in the constitution about no cruel or unusual punishment.

The reason I bring this up is that I came across a clinical trial that looks pretty promising. I tried to imagine what my future might look like if I didn’t have Crohn’s. I tried to imagine what I’d do today or tomorrow if I were cured. I tried to imagine…but I came up blank. What could I possibly do with all that time I wouldn’t spend in the bathroom?? I could start a secret family in a foreign country somewhere! That is how much time I’d have.

There is a center that is doing this procedure in Panama; they are called the Stem Cell Institute. They use stem cells (the patient’s own cells – a totally ethical practice. No babies were hurt in the making of this cure) to treat so many conditions: spinal cord injuries, MS, arthritis, other autoimmune diseases, cerebral palsy, autism, and heart failure.

There is no doubt that these people are doing AMAZING work, but I have to admit that it’s a little hard to watch their videos of their successes. For example, I’d happily scream to the world and enthusiastically share with all my friends the video of their stem cell treatment of spinal cord injuries and how their patients are now learning to walk again (video posted below)! It’s so much easier for me to have hope for someone else than for myself. As soon as they start talking about “me” or patients like me, it makes me uncomfortable.

Hope is a funny thing. People often are compassionate and courteous about a disabled person’s limitations but sometimes don’t understand immediately that you can wield Hope like a weapon.

That said, I really enjoyed reading what the Stem Cell Institute has been up to. If you have the time to check it out, it could be some fun summer reading. I imagine a long vacation in Panama wouldn’t be terrible 🙂

I speak only for myself and my views in this blog. I may haved overgeneralize a bit, but if you see things differently, please chime in. I’d be curious to know what people disagree with me on.

Enabling disabled actors

We’ve talked a bit about the portrayal of disabilities on the silver screen, but what about in the movies?

It was recently pointed out to me that disabled characters are often the villains. Think Darth Vader, Captain Hook and the six fingered man in the Princess Bride. This messes with how the public perceives disabilities.

Strides are being made in this category, but many people wonder why disabled characters are often played by able-bodied actors. The obvious and overused comparison is that you no longer “black-up” actors. So why is it so accepted for disabled roles?

So for the sake of equal opportunity employment, and considering able-bodied actors are taking disabled roles….disabled actors should be cast for able-bodied roles.

When casting a part why assume that every part has to be played by a non-disabled actor? Why not consider giving a character a disability without worrying about integrating the disability into the script? Why not make sure that your extras sometimes include people with visible impairments?  —mediaanddisability.org

It actually makes a lot of sense and will impact our culture and perceptions of disabilities the way disabled villains are partially responsible for some bad reactions towards the disabled. Why should a disabled person follow a different script than an able-bodied person? They share a similar script every day, so why should it matter on screen?

I think a lot of the reservations towards casting disabled actors stems from Hollywood’s fear. In a city where careers are based on appearance, it’s scary to endure Hollywood when you are one accident away from losing everything.

Society fears disability because it is the only minority we could all become part of.  —backstage.com

I think it would be so cool to see a movie who’s protagonist has a disability but is never directly addressed in the movie.

Mile High Miracle

Are you finding it harder to find a spot? Odds are that if you use handicap parking, you’ve been inconvenienced by an able-bodied violator at least once. I think this is something we have just come to accept, or at the very least expect.

Some people take this a step further and bring this same sort of behavior to the airport. You see, airports offer wheelchair service to disabled passengers. However, they cannot ask for any proof of disability so it is easy to request a chair when you are perfectly capable of navigating the airport with ease. WHY would someone do that? you may be asking. Well, let me tell you: people using wheelchair service get a front of the line pass at TSA. And if it suits that person to be “disabled” a little while longer, they can board the aircraft first.

Airport wheelchair pusher

Okay, big whoop. People take advantage of the system; it’s an age old story. Why should I care? Well, let me tell you: disabled passengers can reserve wheelchair service. You might notice wheelchair pushers in airports, just waiting for the person who reserved their service. But if you approach them and ask to use their service, you would get the chair. It’s first come, first served. This leaves the reservee cold and dry as they have to wait for a new chair.

If that doesn’t speak to you, let’s try a different approach: every time the need for wheelchair service is faked, it can cost the airline over $40. The best estimate for how many people abuse this service is 15%, and that’s a conservative figure. That probably averages out to at least 2 people per flight. Lets say $100 goes towards these fakers on your flight—that’s almost a dollar extra you spend every flight for these cheaters.

Using a handicap stall in the bathroom is one thing. Using a handicap parking space in an emergency—I can forgive that.  But if I were to travel with someone I love who really needs this service, we do everything right and reserve the chair only to have it swiped by someone who is clearly able bodied, and have to wait half hour for a new chair…I’d be furious.

This isn’t the airline’s fault; they are following ADA regulations. In fact, a lot of employees catch these imposters jumping out of their seat when they clear security or when the flight lands, running with their luggage. They call them “Miracles”. I think this one of those “laugh to not cry” things and that employees are similarly frustrated with this behavior. The truth is, it’s our fellow man’s fault.

What kind of culture fosters this belief in 15% of travelers that it’s okay to take a chair from a truly disabled person? Where’s the respect? As I reported last week, violent crimes against the disabled have increased because they collect government disability benefits. This hypocritical paradox thing just blows me away. Attack the disabled and steal their services—in what world is this okay? I’m feeling a little disgusted right now for being a member of the human race.

I don’t mean to homo sapien sapien bash, but it is Controversy Humpday, so you are allowed to have strong opinions today, especially if you share them in a comment.

Air models

In the US, you can count on disability regulations to be clear and enforced. Of course, at times you may encounter situations where these regulations aren’t being met, but offenders will be accountable.

If you travel, you’ll likely encounter places with less comprehensive, less clear and less enforced rules. So when it comes to air travel, the airline you pick can make all the difference in your experience.

Two of Europe’s most popular, economical carriers are EasyJet and Ryanair. When I flew with these two, I’m pretty sure everyone felt a little inconvenienced. For one, you can only bring a carry-on, all checked bags cost a fee. Also, you always enter and exit the plane from the tarmac, using those narrow steep stairs. For someone who uses a wheelchair, these restrictions can be…well, too restricting to travel at all! And that is exactly the case!

In 2010, EasyJet was singled out for not allowing power chairs over 60 kg (without battery) to be transported. This is not the “official” rule, but it’s the rule that was in practice. But even so, they handle these chairs so poorly, they are often damaged (sometimes severely or to the point they must be replaced). And on top of that, passengers needing to use oxygen are charged a  £100 “tax on breathing”. Here’s just a small snippet of the article on the Trailblazer group’s research:

More than half of the 100 young disabled people surveyed for the report said that travelling by plane was so inaccessible that they were unlikely to choose it as an option, while many of those who had chosen to fly revealed experiences of discrimination.

Several travellers said they had landed in a foreign country to find their wheelchair had been broken by careless handling, while others said toilets on planes were so inaccessible that they were unable to use them, leaving one passenger unable to go for 11 hours.

This was almost 3 years ago, but it’s hard to tell if they’ve made any improvements. Afterall, it seems their “official” rules mean nothing.

You can read about an incident that occurred several years before this article with Ryanair. You should read the story in full for all the disturbing–and honestly unbelievable–details. Here’s just a few of those details:

The author, after enduring several months of chemotherapy for cancer in their spine, was traveling with their parents: 76 year old father with cerebral palsy and “minuscule and frail” mother. The mother was the only one able to carry any of their many bags of medical equipment.

  • The father was denied access to an accessible bathroom and had to wait an hour to for the hoist to be summoned so he could disembark the plane.
  • They were harassed by an immigration official for moving to slowly.
  • Their prepaid transportation didn’t show up at the airport, and  on the return trip to the airport, the transportation wasn’t accessible.
  • The airport wheelchair pusher abandoned them before customs because “this is as far as I am expected to take you”

Now this experience was quite a few years ago (under 10) but I think it illustrates the history of this sort of sentiment. You don’t need a specific law to say, push all passengers to their destination or be patient with mobility-challenged passengers. You need respect and decency towards the disabled to do those things. So even though this account is in the past, it isn’t nearly far enough in the past!

These errors continue to happen. Even in the US these things happen (remember how the TSA agent ruined a 3 year old girl in a wheelchair’s entire trip?). But I think we hold each other to a higher standard than other parts of the world.

I don’t mean to bash Europe. Rather, I intend to single out airlines who should step up to the level of their peers. In fact, I think Europe has some fantastic carriers! British Airways has this great policy: “You can bring an unlimited number of wheelchairs or mobility aids in addition to your free baggage allowance.” They also have a wonderful site to answer all sorts of questions for disabled travelers in a clear and easy way.

BA isn’t the only good carrier out there either. I just think they are one of the examples other airlines should aspire to–not only airlines like EasyJet and Ryanair, but even airlines in the States!

The question is, how do we get airlines hold themselves to a higher standard?

Note: Since the above Ryanair story, this new legislation has been passed (in 2008)

How vanity makes the world a better place

Not to brag, but my family has some outrageously gorgeous people in it. And my friends? They’re all ridiculously beautiful too! Wayyy better looking than the general population. I’m not talking about personalities here, I mean beautiful in the most literal and shallow sense of the word.

Before you judge me, take a moment to think about the people you love and how good looking they are. I bet you’re realizing that you must be shallow too.

For me, the vast majority of the masses are just meh, average, nothing special. My acquaintances usually tend away from average, either really nice looking or a bit of an eye sore. Maybe it’s a karma thing–if you take the time to be nice to people, they take the time to notice how smooth your skin is or how shiny your hair is. If you take the time to be mean to people, they take the time to notice your flaws. And by this magic, all your friends are exceptional looking.

The interesting thing is this growing movement to show the beauty in people with disabilities. To the friends of these models, they’ve always seen the beauty and it’s the most obvious thing in the world. But in a culture where disabilities are hidden away, people don’t know how to recognize that beauty for themselves; they must be shown. And that is what is so important about the efforts of people like Debbie van der PuttenAimee Mullins and Ali Stroker: including disabled models and actors in mainstream media. Because when someone takes the time to appreciate and share the beauty of another person, it’s easy to see the person behind the appearance. And that goes for any sort of demographic. I’m sure that if you’d never seen a guy taller than 6 feet before, you’d think he’s pretty funny looking and have a hard time looking past it to see him for his personality. Think about how long it took people from the history books to look past people with a different color skin than they were used to seeing.

Last year’s Fashion Week in Ukraine was a massive step for this country for not only embracing but also integrating the disabled community. One night they hosted a special fashion show, Fashion Chance, featuring models with disabilities.

Blind model at Fashion Chance

Models in wheelchairs preparing for Fashion ChanceBlind models in Fashion Chance

Living in Ukraine with a disability is shockingly different from that same experience in the US. The lack of ramps, elevators and accessible transportation cuts off all connection to the general public. After WWII, many disabled citizens and injured soldiers were locked away in institutions or on remote islands to isolate them from the general public. Even children struggle with this: there are only about 10 inclusive schools Kiev, in a city with tens of thousands of disabled children!! And these struggles only continue as 75% of disabled adults are unemployed.

These are some major issues! And efforts like this fashion show will prove to be among the most powerful weapons we have to right these wrongs! It’s about so much more than vanity.

In a place where disabilities are so hidden…

When I roll in my wheelchair, people stare at me like I am an alien and it wounds. –Yulia Kozluk

…no wonder people react this way.

It’s hard to see beauty or value in the foreign, the unknown, the alien, but it’s hard to miss when you take the chance to look. Fashion Chance for many Ukrainians was their first chance to look.

When we look at a disabled person, we are not ready to see a person in them… we should first be seeing a person and only then notice their peculiarities – are they tall or short, do they have blond or dark hair, do they have disabilities or not   —Natalia Skripka, Director of Ukraine’s National Assembly for Disabled

Do you think the media has affected how you see disabilities?

Is the TSA agent patting you down a criminal?

Let’s pretend for a second that we are all conspiracy theorists. Now, let’s think about TSA check points.

You pull out all your belongings and put them in bins. You separate out all your liquids and your computer gets it’s own bin, too. You take off your shoes, belt, jacket and empty your pockets and go through the scanner.  You set off the metal detector because of your zipper and have to be privately screened: (Fe)male Assist!  You finish this ridiculous charade, get dressed, grab your things and go.

How many conspiracy bells are going off? And, when you consider all the bad press the TSA has gotten recently for allowing knives on carry-ons  and mistreating disabled children, all the bell ringing is enough to cause a seizure.

One of those bells might be saying This circus act is just a way to distract me! The scary thing is, it’s not a conspiracy theory at all. It’s fact.  See for yourself:

Upwards of 400 TSA agents have been fired for stealing from passengers/luggage. Notice it said fired—I guess that means no legal action was taken. Isn’t it just a tad unsettling that some of the people in charge of security are criminals themselves? I hope someone takes off their shoes and scan’s their zippers.

TSA screening

The good news is, I spoke with a disability travel expert at the Abilities Expo and she said these TSA horror stories don’t happen all that often. I tend to agree: it’s only a few that make so many look bad. (If medical mistakes got as much coverage as TSA, no one would ever go to a doctor. Ever.) The lady at the Expo spoke encouragingly about TSA’s Sensitivity Training.  Some people think this training isn’t enough. TSA itself has behaved a little sketchy by removing the right to film/photograph security screenings from their website, so I can understand passengers’ concern.

What have your experiences with TSA been like? What changes would you like to see?