Advocacy ≠ It’s All About Me

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Yup. Like most of the Atlantic coastline, we’ve been getting the snow. Enough snow that warranted a “whoops Denise” accident with two emergency room visits to follow. But hey… that’s OLD NEWS now so I digress…

Last week, most schools closed both Thursday and Friday. Since my entire family works at a school, that meant we were all home.

Together.

In the same house.

By Friday afternoon I was BEGGING my husband to get me down the hill and out of the neighborhood. We unburied the car, unblocked our space that the snow crews had “accidentally” blocked off with huge mounds of snow, warmed the car up for ten minutes, and escaped.

It was also Valentine’s Day. My husband knows better than to get me chocolate or flowers. I love cards. I love to eat out. (Something to do with not having to fix it or clean it up?) So we went on a “date”. I was thrilled. Not only had I escaped the house but now I was going out to eat a late lunch for Valentine’s Day.

I’ll admit it. I wasn’t thinking about “pottying my service dog” at home where I had cleared out a space in the grass so the dogs could easily go. My mind was on one thing. Escape. So by the time we arrived at the restaurant, it took seconds for me to realize my mistake. I had forgotten that snow plows pile up the snow on the mulch, grassy areas, or right on the other side of the sidewalks so that the walkway is clear. You can only get to the grass if you climb up a huge man-made snow drift! We got out of the car and my husband looked around.

“Gosh. Can you believe it? What are people with service dogs suppose to do?” he said with heartfelt exasperation.

I looked at him quizzically for a second or two before responding. “Ummm. It’s not THEIR fault that I didn’t take care of pottying MY service dog before I left home”. 

I was so proud of myself. I practically beamed from the inside out. There may have been a faint glow coming out of my ears and nostrils. Yup. I’m pretty sure I was beaming.

My Problem Isn’t THEIR Problem

You see? The only person who is responsible for making sure my service dog’s needs are taken care of are ME. There was a time when I advocated very poorly. Do you know I never once improved my situation by poorly advocating? Poor advocacy is accomplished when your attitude is wrong. These wrong attitudes can include a critical spirit, self-pity, self-righteousness, indignation, pessimism, and a persecution complex.

Sometimes people with invisible illness or disability advocate poorly because we are fed up. Maybe you have faced very real discrimination. This can make us feel defensive. Worse? It can make us go on the OFFENSIVE. However, advocacy is similar to a trial. We plead our case, provide evidence, and attempt swaying another to do the right thing and perhaps facilitate change, follow the law, understand our predicament, or simply raise awareness.

It was not the responsibility of Outback Steakhouse to make sure my service dog had an easily accessible place to potty before entering the establishment. Had I gone in and demanded accommodation for something like that I wouldn’t have gotten very far. I did let them know that the crew they hired to plow their parking lot had piled a bunch of snow up in a handicapped space, “… and what was someone to do who wanted to eat out and had mobility issues, needing the space?” (I’ve noticed people listen to a person with disability advocating on behalf of another with disability).

Unfortunately, this doesn’t mean that you never have to…

lock and load” (Ok. That’s is a bit much, yes?)

gird up your loins” (Umm. Creepy much?)

put up your dukes” (*rolls eyes* What is this? A boxing match?)

FIGHT FAIR. That’s right. Sometimes you may have to fight to make sure your rights as a person with disability or invisible illness are upheld. But remember, this is about equality, not superiority. In the end, you want to sway others to your way of thinking or to understand the law. This isn’t about special privileges, recognition, or “it’s all about me”. That has never defined advocacy.

Denise Portis

© 2014 Personal Hearing Loss Journal

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6 thoughts on “Advocacy ≠ It’s All About Me

  1. Well done, Denise! It IS hard sometimes to find that balance, to advocate for oneself and yet bear in mind who is responsible for what. I have tended to do myself a disservice (though I really am getting better) in that I’d lean towards the “I will just work around the barriers” as opposed to parsing out when it is within my ability to do so and when I’m cutting myself out of having a richer experience because certain needs, legally supportable, are not being me and not being fulfilled by the appropriate parties. I love how you accomplished more than just advocating for a person who may not be able to park and enter the restaurant because of the plowing errors. You also shined a nice light on the whole of the thing: don’t forget that we don’t all come into your restaurant the same way. How different is it really from keeping salt off the plate of someone who has a dietary restriction? I think the more things are presented in that manner, the more a wide range of folks will be accommodated, not only because of their special needs, but in a very practical business way of thinking.

    1. I find myself “working around the barriers” too. Those closest to me grimace that I’m so quick to advocate on behalf of another but suffer in silence myself. Well – erm – suffer anyway, albeit not silently. Gotta bellyache to someone! I have learned to draw the line in a healthy way though I think. Learning to “work around the barriers”, or “ask/demand the barriers be removed”. Like you said it is hard to find the balance. 🙂

  2. Bravo! I read an article about being your own advocate when you are deaf. It was very aggressive and expected people to completely understand the deaf person’s needs after being told once. Not really explained, but being told….there’s a difference. As you explained about the parking space, you didn’t tell them they needed to get that fixed right now because of the ADA.

    I commented that I understand that most of the people I come in contact with are not used to dealing with a deaf person, or someone with a walker, or with CI’s…ect. I explain my needs….they normally try and then get involved and revert back to their old ways….not looking at me when they speak, speak slower, enunciate…I understand, they are human, it’s hard to relearn something they have been doing over and over immediately. I’m compassionate. I will explain again…and they get better. This often happens in doctor’s offices. If it happens enough I admit I will stop answering the person when they look away. When they look at me, I’ll say I saw they were talking but assumed it was to my husband because they weren’t talking where I could see their lips. Then they usually learn.
    I did have to get more assertive to an ER doctor recently. I don’t know a lot of ASL, but he kept talking to the friend who took me to the ER, instead of me. I asked numerous times for him to look at me when he talked…nothing changed. So I signed that I needed to see his lips. He stopped and looked at me so quizically….I said, that’s how it feels when you are looking at someone else when you talk, I can’t understand you. He finally got it.

    Like you I’m more likely to advocate for someone else. I used to never talk up for myself. I let my husband talk to all the doctors and listen for me. Finally, I thought, I’m the patient and I feel like I’m only understanding half of what I need to. So that stopped.

    (I don’t ask for CART, because I often have to cancel appointments at the last minute due to vertigo or severe migraines, my doctors now do not charge me for those visits, I know I would have to pay for them if I had requested a CART interpreter.)

    Thank you as always for your insight.

  3. Winter and my dog does not seem to stop her, she uses the same spot snow or not. When th weather is so cold it does not take her long. When on her lease she helps pull my snow scoop ,lol,and seems to enjoy helping .she is an active lab/ border collie cross.
    Going to Germany in May, 41 years later, now with a hearing loss. It’s going to go fine.

  4. Very very well said. It’s really a fine line to walk and easy to slip off from time to time. In fact there are still a lot of times when I wonder if I’m on the right side or not, and I fall in to thinking some things are in a mythical “grey area.” Hmm. I may need to write about this. 🙂

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