When I met my now husband, Elliot, in 2006, I’d never dated anyone who wasn’t as lily-white as me. In fact, the area where I went to high school in Ohio was so homogeneous, that going to UCF (That’s the University of Central Florida for those of you not familiar with the Knights) for college was a HUGE adjustment in so many ways, but especially because of the diversity. Meeting someone new, whether a romantic or other relationship, and learning to adjust to their idiosyncrasies is complicated enough, but throw in different skin tone and cultures and that can get messy super fast.
I’m not going to suggest that Elliot and I have it figured out or we (really, I) haven’t made mistakes over the years; however, after nearly 11 years of marriage (as of 2019 when I’m writing this) and knowing each other even longer, we’ve found a stable normal, mostly. Elliot still reminds me at times when my white privilege is peeking through and parenting has been more complicated since not only are our boys a different gender than I, they also are experiencing some different things since they are much browner than I am as well.
What I have learned, as the white wife of a mixed and dark skinned Jamaican husband and the mother of two mixed race boys, is that I can say things they can’t say. Elliot can say things I can’t say. We’ve learned to be strategic and we’ve learned to play off each other’s strengths. For instance, I’m pretty much a bull in a china shop at times, especially when something has happened with my kiddos; the gloves come off and I’m talking about lawsuits and asking for insurance documentation. Elliot is super diplomatic and has the advantage of being able to interact with people he doesn’t particularly like without them knowing his true feelings. If I don’t care for someone, they know it, the whole world knows it. I honestly never learned to control my face. And now I have no filter. At all.
So, what’s the point of this?
I’ve learned a little bit about how to be an ally.
I’ve learned that there are times that I need to keep my mouth shut.
I’ve learned that I have to stand up for my kiddos in a different way.
I’ve learned that there are times I HAVE to speak up.
I’ve learned that if someone is behaving in a racist way, then I’m the one who has to call a spade a spade.
Why? Because I’m white. And white privilege is a real thing. It sucks, but its real.
The thing with white privilege is that we white people don’t know and can’t really imagine the experiences of someone who is not white. Elliot explains things to me regularly and sometimes I’m completely flabbergasted, it’s 2019!! I’ve certainly been discriminated against based on gender and treated differently than men, especially in the legal profession. That is a good analogous experience, but it’s also not completely transferable.
What I am is loyal. When I see my husband or, God forbid, my boys being treated differently in a negative way, that hurts my heart and bruises my soul. Hell hath no fury like a lawyer whose loved ones have been discriminated against. Seriously. You mess with my people, you got issues com’n your way and I’m pretty good at using the legal system when I need to.
To me, when you love someone, then their hurt is your hurt. I’ve not heard of a good metaphor for what animal one becomes if a spouse is attacked, but I have no problem bringing out the mama bear persona when my kiddos are attacked. I’ll have to think of what animal it would be when my husband is treated badly–he can take care of himself and does so admirably; however, he knows I have his back and he has mine. Sometimes that means backing down and withdrawing, sometimes that means a confrontation. I’m sure none of you can figure out which one is my preference.
I share all of this to set up what I really want to talk about. I share all of this to explain how I’ve lived a large part of my adult life learning how to be an ally to someone whose experiences are diametrically different than mine. I’ve also worked in the legal field advocating for foster children for nearly 20 years and most of those clients were minorities and many of those kiddos were on the spectrum. It’s been a long road and I certainly don’t have everything figured out, but I’ve picked up a few things.
While race is not the perfect analogy, there is a similar divide in the breast cancer community between those with early stage breast cancer and those of us in the terminal “club” with Stage IV metastatic breast cancer. When I wrote a blog in late 2018 about that divide and my actual real life experiences of literal discrimination, that struck a chord with so many (it’s actually been accessed over 7000 times from 20 different countries!!) and now I can share my own blog post when I see it happening. It’s a nice shorthand rather than having to explain it all again.
The point of all of this is this … if you want to be an ally to any community, you don’t get to dictate the terms of how that works or what that looks like. Being an ally does not mean that you tell someone else how you will be supporting them. You ask or otherwise figure out what the community you are trying to support actually needs/wants. Being an ally also does not mean that you place your experiences on the same level as another person’s unless it actually is on the same level.
I know this from my own experiences, I tried to tell my husband early on how things should work, how we should work together, how I would “help” as an ally. He’s much more polite than I am and I realize he was so very kind to me in my earliest efforts. I know he knew that my angst over how he was treated came from a good place and he’s such a kind man that he tolerates my craziness. I get the side eye from him a lot and I’m better at reading him wanting me to back off, but I still go off on my own soap box probably too often. I’m lucky and blessed and all of those good adverbs to describe Elliot’s place in my life.
I’ve not been as kind to people who have attempted to tell me how they would be my ally on their own terms. I’ve not been as kind to the woman who tried to tell me that she had the cure for my scanxiety because she had cured hers when dealing with endometriosis. I don’t do subtlety well. Frankly, I have no use for vision boards or cognitive behavioral therapy or any other method that teaches someone to overlook reality and pretend everything is different than it is.
I live in the real world where the scans I have done tell me how long I’m going to likely live. That is anxiety or scanxiety on a different level, on a terminal level.
Sometimes I wish I could invite others to live inside my head, inside my life, inside my experiences for a minute, an hour, a day. That would be so much easier than trying to explain. I struggle to put words sometimes together to explain, I reach for metaphors that have their own issues.
So, I’m writing this blog post to be able to share with others when this happens again, because it happen so depressingly often.
Here are my top 10 ways to be an ally to the stage IV metastatic breast cancer community when you are not Stage IV, in no particular order:
- Ask us what we want to be called, if there is a label that resonates with us.
- If we tell you what we want to be called, use that term and not anything else.
- Hold space for us when we are having a tough time.
- P.S. Holding space means not telling us what to do.
- Ask us if we want to hear suggestions for remedies for whatever it is we’re dealing with. If we say no, THEN DON’T SAY ANYTHING.
- Don’t give medical advice if you are not a medical professional. That’s called practicing medicine without a license and it infuriates me just as much as people who try to practice law without a license. There are also criminal and financial sanctions for that. Don’t test me, I will report people and have.
- Ask us if we’re in a place where hearing about a different remedy that worked for you would be helpful. If we say no, THEN DON’T SAY ANYTHING. Yes, this is listed twice. That’s not a mistake. This is a BIG DEAL.
- On the flip side, saying something is better than saying nothing. Saying you don’t know what to say is better than saying nothing. Saying you have something you want to say when the time is right is better than nothing. Showing up is key.
- If you are selling something, ask before you start sending information about whatever product you think is a miracle. Seriously, don’t send me info on the miracle product that you don’t know the ingredients to and if I say no, STOP SENDING IT. I don’t want to join your team and I sure as hell won’t spend my disability money on something without my doctor’s advice.
- Save the meme I included above–toxic positivity DOESN’T WORK. It’s rude and demeaning and elitist and arrogant and awful and infuriating and hurtful and mean.
I obviously feel strongly about this. I want allies. We metsters need allies. The median life expectancy of us stage IV lifers is 2-3 years. That means we die, quickly. We need people who don’t have cancer, who are cancer free, who have early stage cancer, who know someone diagnosed, really everyone, to fight with us. Make no mistake, we are in a battle to fund sufficient research to give us options until a cure is found. We all need to work together to make a difference for us.
Be an ally.
Ask me how.