DEAR SANTA: A WHEELCHAIR SPEEDOMETER WOULD BE NICE

Dear Santa:

 

It’s been a few years since I last wrote to you. Like, 45. Probably makes you wonder why I’m sending you this letter now.

 

First off, let me assure you I’m not writing to ask you for any gifts for myself. I mean, there are some neat-o gizmos that any gimp, myself included, would love. For example, I wouldn’t mind having a speedometer. Why, you ask? So the next time a stranger (that is, the 4,739^th stranger) looks at my chair and asks me “how fast can that thing go?” instead of yelling “bite me,” I can actually holler out a number.

 

I also wouldn’t mind receiving a pair of shoes. And I’m not talking about a pair of SAS orthopedic, turd brown lace-up Oxfords, like us crips and Denny’s waitresses are so fond of. No siree. I’m talking about a pair of Christian Louboutin Highness Tattoo Dragon platform pumps with a seven inch heel. (If you’re not familiar with Mr. Louboutin’s creations, think back to the type of shoes that only strippers used to wear. For a cool $1,595, now lady executives, lawyers and doctors can wear ‘em, too.)

 

And I wanna be clear: there’s no way on God’s green Earth I could ever stand in those shoes, let alone take a few steps. What I’d like to do is scuff up the soles real good so they look like they’ve been walked in a whole lot. I’d put them on, get in my wheelchair and go out in public. I’d be sure to sit in the chair so the bottoms of the shoes can easily be seen. Then, I’d take photos of the reactions on people’s faces. I would even create an Instagram account for them.

 

But enough about my flights of fancy. The real point of this letter is to ask for Christmas gifts for other very deserving people: people who have taken positions on issues affecting us crips. The gifts would show gratitude for their valiant efforts for disability rights.

 

• First, Santa, please bring gifts for the politicians. In particular, I’m talking about the ones who say that the Americans with Disabilities Act hurts business owners. How does the ADA hurt them, you ask? Apparently, requiring a ramped entrance or lowered counters is likely to bankrupt restaurants, stores, theaters, etc. So, even though the ADA is a federal civil rights law, the politicos want to enable businesses to opt-out of it. Otherwise, the entire U.S. economy will collapse just like it did right after the Civil Rights laws of the 1960s were passed. (It did, right?) And we can’t have that. So, Santa please give these politicians the gift of not getting re-elected so they can make an honest living flipping burgers at businesses that discriminate against gimps.
• The next group of folks that deserve gifts are the architects, builders and town planners that oppose visitability. Visitability is the movement to change the way homes are constructed so that new homes will have things like a zero-step entrance, interior doors wide enough for wheelchairs, and a half bath on the main floor. Visitability objectors claim these things quash creative design and even worse, give the false impression that non-gimps might someday cross over into gimpdom! For those who are against visitability, please, Santa, give them the gift of six months in a long-leg cast and the inability to use crutches. This will require them to climb stairs on their hands and knees just to get the crapper. Think of the toughness of personal character this will build in those who oppose building accessible homes!
• And last but not least, Santa, please bring something special for people who lie about their pets. You know, the inventive folks who dress up their Shih Tzus and Rottweilers in nylon vests and claim they’re service dogs just so they can take them into the Gap and Olive Garden. Such resourcefulness deserves recognition, even if it creates ill feelings toward and distrust of disabled folks with genuine service dogs. For these folks, please give them the gift of a dog bite that gets infected so they end up with a pronounced limp. That way, even if they happen to misplace the dog vest and service dog ID card they purchased from a phony company on the Internet, they won’t need ‘em. The limp will speak loud and clear.   

 Well, Santa, I guess I’ve asked for my annual quota of gifts, so I’ll sign off. I’ll have to ask you for gifts for condo and home owners’ associations that bully disabled people next year.

 

Love,

Heidi

WHEN PUTTING ON THE DOG IS A PUT-ON

What is it with human beings and their tendency to exploit something, even if means hurting others?

 

It seems there’s been an incredible proliferation of fake service animals as of late. Some people without disabilities are choosing to masquerade as folks who are disabled and pretend Fido or Fifi is a service dog rather than a pet. Then the dog can accompany them anywhere the general public can go: restaurants, stores, theaters, parks, hotels, airplanes – you name it.

 

How can this be? Unfortunately, the law inadvertently makes fraud possible.

 

If someone is legitimately disabled, the disability is obvious and the dog’s assistance is readily apparent (e.g., the dog is guiding an individual who is blind, pulling a person's wheelchair, or providing assistance with stability or balance to an individual with an observable mobility disability), then the ADA says a business is not even supposed to ask questions. Owner and dog are to be admitted.

 

When the person’s disability is not apparent – as would be the case for someone malingering but also for someone with a legitimate but hidden disability -- the law allows a business to ask the dog owner two questions. Does he need the animal because of a disability and what tasks has the animal been trained to perform? But that’s it. If the fraudster says the dog is a service animal and gives one example of a “task,” the inquiry ends. Come on in.

 

Under no circumstance can a business require the owner to present any special identification cards or proof that the animal has been certified, trained, or licensed as a service animal.

 

Obviously, knuckleheads gaming the system hurt folks with real but hidden disabilities the most. But in the end, the fakers hurt everyone. Businesses are becoming more suspicious and, ignorant of the law, are insisting that a legitimate service dog must wear a special vest or its owner must have some sort of a wallet card certification.

 

Because folks with real disabilities are growing tired of being hassled every time they go to Red Lobster or the Gap with their dogs, they’re buying these unnecessary things. Plenty of companies online are more than happy to sell you a $5 vest, a $2 tag and a $1 wallet care for $200, plus shipping and handling.    

 

The more folks that outfit their dogs with these unnecessary items, the more business owners think they’re required. It creates an ugly vicious cycle.

 

The fraudsters apparently see no harm in their lies. They think it’s no big deal that disabled folks are being eyed with suspicion and may even be turned away by frustrated, misinformed business owners.

 

In the end, people with real disabilities who truly need service dogs are the ones who pay the price.

THE PRISON OF DENIAL

I used to think denial was like a light switch: either all the way on, or all the way off. For example, you either believed in evolution, or you clung to your knuckle-dragging dogma and denied its existence altogether.

But like so much of human behavior, denial is complicated, shaded between stark black and white with many hues of gray.

Denial can only be put to rest with unconditional acceptance, and acceptance is a long, multi-layered process. I know this all too well. It took me many years to fully accept my diagnosis of rheumatoid arthritis.

No one wants to accept that something terrible has happened to them or to a loved one, especially something utterly undeserved. We want to believe that, all things considered, the universe is fair. The good will be rewarded; the evil, punished. 

What if the terrible thing that happens is starkly real today, but illusive tomorrow? A severed leg ain’t growing back -- ever. You either accept it or you’re going fall down a lot.  But rheumatoid arthritis, or RA -- my disability, is often episodic. Just when you think you can’t take one more miserable day, it eases off for a bit. This only encourages the false hope that the medication, prayers or copper bracelets are actually working.

None of the many forms of arthritis have any known causes or cures. Lots of theories, nothing for certain. This always leaves the door open to “someday they’ll find a cure.” I can tell you that – if you’re not careful -- that door leads straight to the dungeon of denial.

Today, there still are no cures for RA but there are many good medications that can effectively manage symptoms and prevent joint damage. But back in my day if you had the disease in severe form, effective treatment options were sparse.

After half a century of living, I accept that I will always use a wheelchair for mobility. That I will never climb the terraces of Machu Picchu, or wear a pair of high heels.

If you’re struggling to accept a disability, don’t beat yourself up. It takes time, lots of crying, a good sense of humor and perhaps some talk therapy.

Stay strong. Fight past the shame of “otherness” imposed on us by society.

Ultimately, acceptance isn’t defeat. It’s liberation.

THE POWER OF WORDS

I’ve never been a fan of terms like “handi-capable,” “differently-abled,” and “special” when it comes to describing people with disabilities. They come off as trivializing, and make it sound like folks can’t deal honestly with their disabilities. I always imagine such terms were coined by someone who has never lived with a disability and dots each letter “i” with a tiny heart.

 

I dislike the word “handicapped” but I’m cool with the word “disabled.” And I’m a fan of people-first language. For those unfamiliar with the term, PFL is a way of speaking and referring to people with disabilities that respects them as human beings, rather than dehumanizes them. It emphasizes the person first and the disability, second. A man with a disability, not a disabled man. A woman who is blind, not a blind woman.

 

PFL represents more respectful, accurate ways of communicating. People with disabilities are not their diagnoses or disabilities; they are people, first.

 

I also cringe when I see disability stereotypes trotted out by the media. You’ve probably seen them yourself. Putting the person with a disability on a pedestal. Depicting a person with a disability as dependent or as an object of pity. Representing the person as having special talents or abilities because of his or her disability, i.e. the blind person who’s musically gifted.

 

I could live a long, happy life without ever again reading one more tear-jerking human interest story about incurable diseases or severe injuries. I’d like to see more stories that focus on issues of quality of life for folks who are disabled. Issues such as accessible transportation, housing, employment opportunities and social interaction.

 

Disability is a natural part of the human condition. The folks with disabilities I’ve met (and myself, too) would rather be known for the things that reflect on their character or their essence as human beings. They would rather be known as a devoted parent or a successful attorney or an amateur gourmet chef rather than as someone with a brace on their leg or someone who wears hearing aids.

 

So, please: no more heroic overachievers or long-suffering saints. No more cutesy terms that set the teeth on edge. No more stigmatizing words that leave a sting.

 

Just people – like everyone else.