Friday, March 23, 2012

Access Denied.

In living with Tourette’s, I have never – knock on wood – been kicked out of anywhere, or even had anybody attempt to kick me out of a public space. The thing about “right to refuse service” is that some people view it as a way to discriminate and kick anybody out that they don’t want in their business. That isn’t the way it works though; a women-only gym has the right to refuse service to men because they are refusing service to every single man on the basis of their business. A restaurant has the right to refuse service to someone who is drunk and disorderly. They cannot however refuse service to me because I am disorderly as a direct result of my tics; you cannot discriminate on the basis of a disability. Even if it’s in the movie The Artist, legally, I can tic to my heart’s content and be as loud and disruptive as my tics dictate because I cannot be refused service on the basis of a disability.

That being said, I don’t put myself in situations where I know I will cause disturbances. While I will fight for my right to be somewhere, it isn’t conducive to me enjoying myself out somewhere or anybody else enjoying themselves anywhere if I can’t stop ticcing. Discriminating against somebody on the basis of a disability is illegal; whether that means a person is seated somewhere away from the rest of the clientele, whether they are given slow service in the hopes they give up and leave, or if they are refused access at the door altogether. Because the nature of my disability is to be loud and disruptive, I cannot be denied access because of that (there are a few very limited exceptions, for example places of worship do not fall under the Americans with Disabilities Act). However, I recognize the impact of my disability. I recognize that because of the nature of my disability that I can be disruptive and that it isn’t always right for me to go places. Not really so much because I worry about disrupting other people, but more because I dislike being in situations where I lose control of my body. It is painful and exhausting to tic, so I rarely will knowingly put myself into situations where that will happen.

As a person with a disability, access challenges are something I worry about. Because I am careful where I go, when I go there, and who I am with, it isn’t something that I truly worry about a lot. When I have a service dog though, access challenges are something I anticipate facing much more often. I have been diligently researching the laws regarding service dogs in public, trying to educate myself so that (even if it is my first time ever in a grocery store or going to a restaurant with my dog by myself) I can sound confident and educated about my rights. For example, I have learned that although it is common courtesy to vest your dog out in public, having a vest or harness or any other identifying feature on my dog is not required by law. My dog will be wearing a mobility harness, so that is a moot point – but, if I were ever without it I wouldn’t need identifying things on my dog. Not to say that life wouldn’t be a little easier if I adhere to the common courtesy and vest my dog. :) There is no form of identification I need to carry in order to have access somewhere; there is no national registry for service dogs, and in my opinion there shouldn’t be. I shouldn’t have to register features of myself and my future dog with a registry in order to go somewhere. If an able-bodied person doesn’t have to prove their right to go somewhere, then neither should I.

I also know that a business can ask me two questions. One, is this a trained service dog for a disability? And two, what tasks does it perform? They cannot ask me what my disability is. I do not have to disclose. Ever. Not even in a work environment (though work environment rules about service dogs are a little different, they still do not need to know the my disability, just the extent to which it affects me and the reasons for a service dog). All I have to say in public is “this is a service dog trained to mitigate symptoms of my disability; it provides mobility support .” Truthfully, that is all I should have to say, but for good measure I can always throw in, “And, under the ADA, you have to allow me and my dog access.” That’s it – they don’t get to pry anymore than that and if I say those things and I have a dog that is well-behaved, I cannot be refused anywhere.

Not that I think those will be the magic words everywhere I go. Walmart had a class-action lawsuit recently due to the gross number of service dog access challenges (and denied access claims) nationwide that led to the change of Walmart policies regarding service animals. The only person in a Walmart who is allowed to ask you about your dog now is the greeter.

I have said before that what I live with is an invisible disability. The truth is though, that it’s a little bit of both; invisible and visible. I look normal, up until the point I stop looking “normal” and start ticcing. People who know me really really well can tell a little bit before the ticcing starts, but there are no outward symptoms or characteristics that alert anybody to the fact I have a disability. For a good majority of the day I am in control of my body; I do not look disabled. If I met you on the street and we had a brief conversation, you wouldn’t even realize I had Tourette’s. Because I am able to appear neurotypcial for short periods of time, I anticipate having – as many people with invisible disabilities and service dogs do – a fair amount of access challenges, or at least people questioning me about my right to have a service dog.

And I have mixed feelings about that. As an educator and somebody who is trying to increase awareness about Tourette Syndrome, I would say that of course I would take the time to educate every person about Tourette’s and my service dog and all the amazing things they can train service dogs to do. As a person with a disability who is sick and tired of being stared at and talked about all the time and just wants a chance to go grocery shopping late at night by herself or go to the movies without worrying about ticcing, I say that it isn’t my job to educate store and restaurant owners. They should be educated on the law and I have a right to go out into public without being harassed about my (future) service dog or the nature of my disability. Now, whenever I am in situations where people question me, ask if I’m okay, or do the blatant from half-way across the room stare, it is because my Tourette’s is “showing.” Those are days where I am so out of control that I am ticcing big enough that people can see, but some circumstance has dictated that I go somewhere – I most likely don’t want to be – out in public for a period of time. Those are days when I haven’t slept, or I have migraines, or I am in excruciating pain. And let me tell you, I am not nice those days. Not to my friends or family and certainly not to nosy strangers. So I don’t really take the time to educate or even explain anything. I glare people down, snap at them that I’m fine, and ignore people. Not really good practices for increasing invisible disability awareness.

People tend to think that because you have a disability or because you have a service dog (or a wheelchair, or a cane, or any other manner of assistive equipment) that it is your job to educate and inform people about your life. Truth be told though, a random stranger asking me personal details about my life with a disability is the same thing as me turning around and asking about their sex life or the date and results of their last physical. Totally rude and inappropriate, right? When you go out to run an errand or you go out with friends, you aren’t expected to disclose such personal information to everyone you encounter. So why am I? Why do people feel like because I am different, the rules of social etiquette shouldn’t apply to me?

There are days out in public I feel like I am an exhibit in a museum for people to stare and ask questions of me. It is different when I give presentations or when I post on my blog because that is me choosing to disclose personal information, and I always have the final say in how much I disclose. I can mentally prepare myself to divulge information in those situations, and sometimes it still leaves me emotionally drained to have been so personal with people I don’t know. Simply because I live a different life than most people, doesn’t give them the right to pry into my life, or give me the obligation to explain my life to everyone I encounter.

So you can see, why I am in a conundrum about how and what to disclose to people in public once I have my service dog. What it boils down to is, of course, I will answer the two mandatory questions – by law I am required to. Odds are though, I won’t tell much more, if anything, than that. Not because I feel the need for privacy, life with Tourette’s has removed me of any thread of modesty about personal information. But because if I start giving away personal information, gatekeepers will assume they can bully the next service dog team that comes by for the same information. Which is against the law.

On top of all of all of that, Tourette Syndrome really isn’t accepted as a disability (assuming people even know what it is). If somebody asks me what my disability is and I tell them, they won’t know or understand why I’m disabled and what the dog does for me (unless of course they read my blog, haha). I’d get into more trouble saying “Tourette Syndrome” than I would simply stating that I have a neurological disorder because Tourette’s is so misunderstood. In doing the best thing for me in avoiding access challenges and disputes, I inadvertently do Tourette’s awareness a disservice. If I choose to make Tourette’s awareness my ultimate goal, I will face a lot more access challenges simply due to the stereotypes and ignorance surrounding Tourette Syndrome.

Legally, it is not my job to educate anybody. Legally, if a business refuses me service it is within my right to leave and file a complaint with the Department of Justice. To the best of my understanding, the first time a business denies access to a service dog team and a complaint is filed they can face a fine up to $10,000; if it can be proved that they have denied access before or if they have face multiple offenses, that fine goes up. Recently, there was a restaurant manager who was arrested and is facing jail time of 6 months in addition to a fine for telling a man his service dog had to stay up front by the doors while he ate, therefore refusing them access. (Her case wasn’t helped much by admitting on the news that she had refused service dog teams access before and that – even after the reporter explained explicitly that was breaking the law – she would do it again without question.) Legally, if somebody refuses me access and it becomes a situation where they are going to refuse no matter what I say, I’m within my rights to call the police. Legally, I don’t have to do or prove anything aside from those two questions to gain access somewhere.

Not to say I won’t. The members of the Dogster service-dog forum talk about making up flyers or business cards with an information about their dog and the ADA on them to give out to people who are curious. I plan to carry an ADA card with me that states the federal laws that require a business to provide me access. But those are for circumstances where simply explaining the laws doesn’t get my point across. I’m not going to be one of those people who purchases a “membership” with a service dog registry to get a snazzy ID card when in reality those are scams set in place for “fakers” (a term which describes a person who calls their pet a service animal in order to bring them into public with them). I don’t need an identification card, and I’m certainly not paying money (typically upwards of $200) to get one. Of course, I would rather educate somebody about my rights rather than get into a fight over it and end up making complaints about a business.

The funny thing is that I almost look forward to access challenges with a service dog. When a person with a disability has a service dog, people look at the service dog instead of the disability. Sure, I anticipate more questions out in public regarding my right to have a service dog and my right to gain access out in public. But they will be questions regarding my service dog, not my just my disability. They won’t just be the “what’s wrong with you” questions, they won’t just be questions based on my physical and verbal tics that are noticeable, they will be about a service dog that I am choosing to take with me somewhere. The access challenges I face with a service dog have a clear-cut ending; legally, I am allowed to go anywhere any other neurotypical person is allowed to go. End story. With Tourette Syndrome, as much as I know I’m legally allowed somewhere, it’s difficult to explain to somebody with no knowledge on the matter why I’m doing what I’m doing. It looks abnormal. And even when I say I can’t control what I’m doing or that it is because of a disability, what it boils down to is that I look completely normal. And the tics I have look like I have control over them, even when I don’t. So when I begin ticcing, it’s hard to gain understanding over the unpredictability and uncontrollable nature of my Tourette’s and it is difficult to explain how a person who looks totally normal has no control over their actions or words and should still be allowed to stay somewhere, even if they are being disruptive. With the dog in tow, at least my access challenges and questions from nosy strangers will be focused on the dog and my reason for having it, as opposed to all the “strange” things I do.

1 comment:

  1. Hi Katherine, I am happy to read your blog and support your effort to get a service dog. I would suggest you not only use evite for your upcoming fundraiser, but create an event on facebook...that would make it easier for us to share and spread the word about this important night. Good Luck! Shelley Shakes, San Ramon Valley Guide Dog Puppy Raiser.