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Self-Advocacy, or The Sky is Falling

            Ever since we moved into this apartment nine years ago there’s been a sort of splotch on the ceiling in my bedroom, next to the overhead light and the broken ceiling fan. We were told early on that the splotch was insignificant, because there was no mold or mildew or any water leaking in from the roof, so, just ignore it. And since the splotch never seemed to change color or get bigger, we ignored it.

“It looked like a chicken to me. I didn’t ignore it.”

            But a week or so ago, I noticed big white flakes of something on my bedroom rug. We had just recently gotten rid of the old couch in the living room, the one that left tiny black flakes of fake leather everywhere, so I sort of thought I was being punked (by Cricket?). My other thought was that Mom was making a quilt with small pieces of white fabric and the leftovers were being tracked into my room by doggy feet. Up close, though, the flakes looked like pieces of eggshell, and then I was annoyed, because Mom has a habit of giving the dogs special treats while she’s making dinner, that they then drag into my room and spread on the floor (I can’t count the number of times I have tripped over carrots on my way to bed), but I couldn’t imagine she would have given them hard boiled eggs with the shells still on, so I called Mom in for her opinion of what the hell was scattered across my floor.

            As soon as Mom saw the eggshell-like pieces on the floor she looked up, so I looked up too, and then it was obvious what the problem was: my ceiling was shedding flakes of white paint. The splotch on the ceiling was bigger, and pieces of white paint were missing and others were dangling from the splotch.

            Mom made some phone calls and found out that my splotch was not the only one in the co-op – there were vents on the roofs of all of the buildings and when we had our recent heavy snowfall everyone who lived under one of these vents had the same leaks, and probably the same splotches. The advice Mom was given was that we sweep the excess paint off the ceiling and ignore it, because we’d have to wait until the weather warmed up before the roofers could get to the repairs.

            And when Mom told me this, I said, oh, okay and I shrugged. The sky is falling. Oh well.

            I’m not proud of myself for being like this, there are just certain areas of my life where my self advocacy skills, or my willingness to fight, are nil. I’m lucky that I have Mom, because she’s much better at making the phone calls to at least demand answers, but I won’t have Mom forever, and I don’t know how to teach myself to become more like her, or even feel empowered enough to believe I have the right to ask for what I need, let alone what I want. I’m much more likely to hide under my bed, or hold my breath and wait.

“I can hold my breath, too.”

            The need for self-advocacy has also come up – a lot – with my health, and it presses all of my buttons: my feelings of invalidation when people ignore me, my lack of self-worth because I feel like they’re right to ignore me, my anxiety about saying the wrong thing and getting in trouble. And the reality is that my attempts at self-advocacy have, historically, left me feeling depleted instead of empowered, because I couldn’t convince the doctor, teacher, publisher, etc., to take me seriously.

“I’ll bark at them for you!”

            As a result, I’ve been doing a lot of research on the subject of self-advocacy, to try to build up to being better at this And so far, the advice has been overwhelming: reward yourself for every attempt at speaking up; decide what you want, and what you are willing to settle for; be clear and concise; be consistent; identify when the other person is being unfair; remember that you have the right to change your mind; make sure to ask for what you want; feel free to express your feelings; and to say no, and to make mistakes; and demand to be treated with respect. And that’s just the short list.

            So it’s not surprising that I still wasn’t up to doing anything different when I went to my most recent doctors’ appointments, but I felt like a failure anyway, because I fell back on my usual coping behavior, which is to make jokes and smile, even when I feel crummy; and to remember the crazy things people say to me, but still smile and nod while they say them. That’s what has allowed me to survive a lot of bad doctor visits in the past, and a lot of everything else, so it’s been hard to give it up.

            Even so, I’m still trying to push myself to fight harder for the things I want, especially to not take failure as an inevitable proof that I am undeserving. I believed, for a long time, that if I deserved good things they would just happen, and therefore when those good things didn’t happen, I must not deserve them. I’ve started to rethink those assumptions, but fighting for myself is hard. It means being willing to keep sending my writing out despite endless rejections, and it means trying to believe that my work is still good, even when ten, or fifty, or a hundred publications tell me that it’s not what they’re looking for right now.   

“It’s exhausting.”

            I wish these lessons could be easier to learn, or at least simpler to understand, but as with everything else in life, it’s complicated. Sometimes taking no for an answer, either from my own body or from something or someone out in the world, is the best choice, so that I can conserve my energy for the next fight. And sometimes the fight itself, convincing myself that I deserve to be heard, is worth the effort, even if a good outcome is unlikely.

            Looking back at the list of advice for how to become a better self-advocate, the one thing that sticks with me is the idea that I should reward myself for each attempt, no matter how unsuccessful. I’ve always done well with rewards as motivation. If I can watch a fun movie while I’m on the exercise bike, then I’m much more likely to make it through the full forty-five minutes, and look forward to getting back on the bike the next day. And if I know that the dogs will be at the door as soon as I come home, throwing themselves at me with relief, it’s much easier to go out in the first place.

            So I’m going to start thinking of possible rewards to pair with speaking up when a doctor tries to blame my health problems on my weight, or to pair with sending out an essay to a new publication. At this point, though, I can’t think of any reward good enough to make me willing to allow a stranger into my room to fix the splotch on the ceiling, so that one will have to wait.

“Have you ever tried chicken treats?”

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?

About rachelmankowitz

I am a fiction writer, a writing coach, and an obsessive chronicler of my dogs' lives.

66 responses »

  1. I have the same self advocacy issues and I’m much older than you. It took me since August last year to address an issue with a relative until this week. The results are on my post today and it’s not good. I’ll check out your YA novel and tell my daughter. Her best friend growing up was Orthodox and we’re Catholic. My daughter went to Temple with her best friend regularly.

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  2. I was greatly helped by a program my church (Episcopal) had called “Women of Vision”, this was many years ago and I have no idea whether it is still happening. Perhaps your synagogue could connect you with a similar program. Although it was through the church, it was more about developing assertive skills in a supportive environment.

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  3. Self-advocacy wears me out, too, but I love the idea of a reward system! Reading that made me feel like if I found the right reward, maybe I could become the kind of person who would demand management send someone to clean up paint flakes for me (although I’m probably getting ahead of myself and should probably start smaller, like not feeling guilty when I ask the grocery cashier for the bag of groceries they’re forgetting to give me). Hope it warms up so they can fix your roof/ceiling soon!

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  4. Rachel, how about flowers for yourself when you advocate for what you deserve?
    From a single rose, to a bouquet of flowers, you can appreciate the growth you are experiencing. Good luck.

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  5. This blog is an example of how you are definitely capable of speaking up, and eloquently at that. I know it’s hard to transfer that writerly energy into speaking confidence, but you can do it! Think of it as a blog post next time…

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  6. iI so agree with Paula (comment above). You are being a super advocate each time you blog. 14,810 people DO listen to you!
    Cheers,
    Julie

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  7. Oh dear! It’s a good thing you have your dogs. They’ll take care of you, Rachel.

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  8. You strike me as being the most confident, straight thinking, well informed, sky is falling”, (ceiling if it makes you feel better) person whose article I thoroughly enjoyed…I’ve ever run across. Keep going. All is well.

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  9. It is extremely difficult to stand up for yourself, and I love the idea of rewarding yourself when you do. I had an awful medical test last week and I started crying. They asked why I was crying(dumb question!) I said because I was SCARED. When it was over and I left, my husband asked me in the waiting room in front of people “how was it?” I told him out loud that it was worse than a colonoscopy prep. I can’t begin to tell you how wonderful each expression of the truth OUT LOUD helped. Here’s rooting for you. I am 74 and am here to say it is never too late to advocate in medical situations.

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  10. I hope you can think of suitable rewards

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  11. As for the ceiling splotch it is probably right that in the winter with snow on the roof it cannot be fixed properly. So you can let that one go. I have sympathy for you with your self advocacy issues. I have always found it easy to speak up for myself and sometimes have been a bit too forceful about it. But a reward for yourself is a great idea. How about a favorite flower or plant?

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  12. Girls, seriously, you pay the doctor, he works FOR YOU, you pay the bill, you are his customer. When he does anything that is harmful to you, disrespects you, hurts you or even when he looks the wrong way at you, tell him he sucks, turn around and walk away.
    People can only be mean to you, ignore you, make fun outta you and do all sorts of things to you as long as you let them. I was a bit like you for a long time, people trampled over me all the time and I wasn’t a happy camper. Don’t let them get away with it.

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  13. I’m not aways good at speaking up AND there’s a splotch on my bedroom ceiling. Good luck dealing with yours.

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  14. Many folks struggle with self-advocacy issues. The one aspect that gave me a big, positive boost was deciding to have more self-respect. This is not the same as ego-tripping or self-confidence. Cultivating self-respect is a core practice.

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  15. I hear you, I sympathize with you, I empathize with you, hell, I AM you! Only in the past 18 months have I started to stand up for myself, and I’ve started small with people I know who will love me either way, and by “warning” them that I was going to start doing this! I tried it with my doctor’s practice last year and got moved to another practitioner, but lately that one has started doing what my previous one had done. I just hate the idea of starting over with someone knew who hasn’t treated me and must start over at square one. I hope you’ll share more of how your journey goes so that I can learn from you.

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  16. I do the same thing. I am good at speaking up and fighting for others but for myself I fall short. Big hugs for you and your Mom and belly rubs for the pups.❤️

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  17. I have learned that most people in the helping professions, myself included, find it easier to speak up for others than for ourselves. The older I have got the more this has improved. I wonder if it would help to remind yourself what you can do for others in necessary circumstances

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  18. You are always deserving, so treat yourself period. It takes a lot to stand up for yourself (me years) but when you’ve done it once, it’s easier the second time………. and third………. Keep positive.

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  19. I don’t have a similar landlord issue, but I do have an ongoing neighbour dispute with a couple who live behind us. This has reached the stage where I now refuse to deal with any of their complaints about hedges and fences. I suggested they instigate legal proceedings against me, and I would comply with any court rulings. I knew this would cost them at least $500, which they would not get back if they lost.
    I was polite, and dealt with them by email, not face to face. Since then (last year) I have heard nothing from them. You get to the stage in life when you just have to stand up against unreasonable people.
    Best wishes, Pete.

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  20. What Mr. BeetleyPete said. Or when the time is right and you need the skill, it WILL be there. Faith is required. If we don’t stand up for ourselves (and I admit that’s horribly scary) who will? God helps, but He won’t fight our battles for us. That’s how we learn and grow apparently. But it explains why your mom is so brave and can advocate. She’s got the years of experience behind her. Enjoy your time now. It goes far too quickly. Also there are some things we can do nothing about except (in my case anyway) give them over to God. I can’t fix or change them. It’s useless to worry or agonize over such things. You’ll find your way. You have great lights.

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  21. I have found beer to be an excellent reward. I use it for everything. I even make up occasions that deserve a reward. In fact, I feel like this post deserves a reward. Gotta go…

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  22. I think it’s a great thing that you don’t give up on what you feel (or know) you need to do to feel and be better. That’s the biggest thing, right there!

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  23. I enjoyed reading this post. Thank you so much for writing it and being honest and truthful.

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  24. Oh the joys of home maintenance. Owner, renter, squatter. It always needs something.

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  25. Even ppl who speak up for themselves often get ignored by drs who act like their gods, or feel like they know more because they have a certain amount of letters after their names. Or just the word ‘Dr’ before their names. My stomach pain and weight loss was ignored by my primary care Dr. And I switched drs, went to see him last March, felt sick. He ran blood work, and my liver and lipase levels are out the roof. This has probably been going on for 4 yrs, but my other Dr ignored me.

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  26. After several blood tests, I have an autoimmune disorder. So now I have an appt with a rheumatologist in 2 weeks to try and figure out which one. My PCP thinks my body’s attacking my pancreas. And I still have one more test, an ERCP, just to make sure; if it can relieve any of the pain I’m having. But my dr doesn’t think it will help. Thankfully I don’t have liver disease–that’s how high my liver enzymes were. So I have to get my levels taken care of; if I don’t, then I could end up with liver failure and pancreatic cancer. So thankfully I left the dr who did nothing.

    For most of my life I’ve felt like I wasn’t heard, however I think I keep trying. I won’t say I know what you’re going through. Your feelings are unique to you. Though I do think that for most of us collectively, those who don’t bully to get their own way, we’ve all experienced not being heard by drs. Or taken seriously. Now whether that’s due to poor time management, greed, big Pharma, insurance companies, or drs losing the meaning of why they went into medicine, I don’t know. But the results are the same–frustration.

    I also don’t like pressing my rights, so whenever I can, I get my husband to do it for me.

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  27. I learned to self-advocate when I needed to advocate for my daughter. How are you at the Vet? Perhaps it’s easier when you advocate for somePUP else so you get the skills 🙂 – ALso, you write so beautifully, that you can probably self-advocate with the written word when possible – And when my voice isn’t loud enough, I get my husband!!!

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  28. Dogs who eat carrots! That is unusual.

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