The Matter Of Privacy

Disclosure is a common topic for people with disabilities, so much so that I took a shot at giving my point of view on the subject. But there’s another subject that doesn’t get the attention it deserves. So much so that it’s taken me months of looking at a tweet to formulate some sort of thought process.

 

Privacy is an odd thing when you have a disability, practically one like Cerebral Palsy that can have more variations than can fit into a textbook.

People want to talk to you, and ask you all kinds of questions. Questions they wouldn’t think of asking anyone else in the same manner.

People want to see you, in some state of undressed, yet still somehow dressed. But no one would ever expect you to go out in public like that, and if you did there’d be a problem or two, or twelve.

I won’t say privacy goes right out the window, but it does have a drastically different definition, especially if you have any understanding of HIPAA.

Being an advocate means giving up more of that privacy for the sake of others who don’t want to or don’t feel comfortable doing so.

I understand that people don’t like to discuss certain topics. I’m no exception to that statement, but I do discuss most of those certain topics because there are numerous stigmas that need to end, particularly around more personal issues, like health, relationships, sex, romance, healthcare (to name some examples).

It shouldn’t be anyone’s business when I started puberty, again another example, but it’s not something that’s generally discussed in the CP community, unless it’s related to skeletal maturity, but even then, the relation to skeletal maturity is left out of the conversation more than it’s included.

I know people want to know things, they have questions. I know because I had them too, I still have questions in some cases.

Privacy is a weird subject when you have Cerebral Palsy because so much of it is stripped from you at a young age, sometimes you’re so young you have no idea that you have a choice when it comes to what you want to be private and what you’re willing to share.

There’s also the matter of topics just not being discussed, like those I’ve mentioned, because of the stigmas of having a disability. We’re human, and not human at the same time. So, there are topics that you don’t feel like you can talk about, or even research without raising suspicion.

I sacrifice my personal right to privacy in the hopes that it helps others, and that maybe someday, sooner rather than later, no one will have to anymore, myself included.

 

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The Matter Of Disclosure

What if you can’t keep your disability a secret (or what if you don’t feel comfortable doing so)? When should you disclose that you have a disability and how?

It can be challenging, but not impossible.

I’m no disclosure expert but I do have thoughts on the subject. Thanks to a few personal experiences, both positive and negative.

I feel compelled to reiterate that these are my personal thoughts and I do not claim to represent anyone other than myself.

There are two questions you should ask yourself when it comes to disclosure. The first is: should I disclose my disability?

If you can answer “no” then you can stop reading and go on with your day. Just think about what the consequences of that “no” could entail. Question 1.2: Are you comfortable with the potential consequences? If your answer is still “no” then, have a nice day.

If your answer to the first question is “yes” then proceed to the next question which is: when (or how) should I disclose?

School: I’ve done both so obviously I’ve seen the positives and negatives of both sides fist hand. The most important thing to know is there are rules/laws out there that can help or hurt you at every stage. Know them before hand, even if using them isn’t part of your plan, because they may have to become part of the plan.

Speaking strictly about college (because I completed basic education in the dark ages) the important thing to remember is services are available but it’s up to you to ask for them (and then make the effort to get them). No one is going to come to you and ask you if you need additional assistance or resources. You’re considered to be an adult so they’re going to treat you like one. One of the biggest benefits to college is that you can have more control over who you disclose to. You can disclose as much or as little as you want as well. But again, make sure you’ve thought about the consequences to not disclosing as much as disclosing.

My suggestion is that you disclose to the disability services office and develop a relationship with them. They can be in your corner regardless of whether or not you disclose to individual professors (which I have both done and not done as well).

Work: Do as much research as you can before you accept a position. You need to be confident that you’re the best person for the job before you can expect others to see you in the same light. I’ve not disclosed my disability more than I’ve disclosed it in the workplace but it’s pretty obvious that I have limitations. You’d have to be blind to not pick up on it. In the workplace I think it’s more important how and when you disclose rather than the actual disclosure. If you bring it up in the interview process be cleaver and casual about it.

Point out what you bring to the table more than the potential barriers; which is basically the same advice you’d give an able-bodied person (I love when life works out like that).

Dating/Relationships: Admittedly this isn’t my most favorite subject but it’s a common occurrence in everyday life so I’ll bite the bullet.

My advice for disclosing while dating or looking to date is similar to my workplace advice. It’s more a matter of how and when you disclose rather than if you should or shouldn’t.

If you’re looking to meet someone online then keep things close to the vest for a while. If you blast it all over your profile then you’ll probably turn people off, or worse attract nothing but creepers and devotees. My only exception to this rule is when it comes to profile pictures; if you feel comfortable showing off your wheelchair or other assistive device in a picture than go for it. In fact it can, for lack of a better term, take some of the disclosure pressure off of you; if they have questions than you can answer them without worrying about whether you’ll scare them off or not.

If you’re planning on meeting in person and you haven’t disclosed then it would be a good idea to say something before meeting, especially if you can’t really hide your disability. You don’t want to seem shady for keeping secrets (from the other person’s prospective). One you’ve met face to face you can disclose as much or as little as you want, just be open to their questions.

If you’re meeting in real life as opposed to online then trust your instincts, as you would at the beginning of any other relationship.

As for disclosing to friends, very few of my friends knew of my textbook diagnosis until I became more involved in the disability community and advocacy, which is a pretty recent development given the length of some friendships. It wasn’t really something I was hiding. The fact that I’m not the same as they are physically is pretty obvious so I can’t exactly hide it, even if I wanted to; if they asked me what my disability was or if it was somehow relevant to group conversation than I said it.

The most important thing to remember about disclosure is that there is no one size fits all answer. Ask for advice because there’s always going to be someone who’s been there before you, but when it comes down to it you just need to listen to your gut. And if someone’s not going to like you (or whatever else) based on your disability then turn around and walk right out the door. You’re better off without people like that in your life no matter the circumstance.

*A similar version of this post was published previously on June 6, 2014