Trans Talk
by Connor Maddocks
For this month’s column, I thought I’d write a bit about individual advocacy. Let’s start with discussing what advocacy means.
According to Webster Merriam Dictionary, the word has three meanings:
- One who defends or maintains a cause or proposal.
- One who supports or promotes the interests of a cause or group.
- One who pleads the cause of another.
The definition I am going to discuss in this article is the third one, “pleading the cause of another.”
As we negotiate our own transitions it is usually a very crooked path, often with starts and stops. Until we are connected with resources within our own community, it can be very difficult to know which path to take first. Everyone’s transition is deeply personal and there are so many decisions to be made.
As most of us know, there is no right or wrong way to go. There is no “one size fits all” for us. There are so many directions one could go, including legal options, such as name and gender changes, updating paperwork and identity documents, like driver’s licenses, passports, and birth certificates. There are personal considerations, such as who to tell, and deciding when it is the right time to tell. Employment considerations and how to navigate those are also on the list of things, which goes on and on.
It is helpful to find a person who knows the ropes, who has been through it all and has taken it upon themselves to be educated on current resources and which local medical professionals can help you. You may have questions like “Is this a good endocrinologist?” or “How about this top surgeon (or bottom surgeon)?” or “primary care docs? mental health professionals?” If you decide to medically transition, knowing the answers to these questions can be the difference between having truly amazing supportive care, or entering a nightmare that can literally put you in a cycle of bad medical care, delays in your transition, or even push you right over the edge.
First you want to try and find your people. Who in San Diego can help get you started? Search for trans and non-binary specific groups. Check the San Diego LGBT Community Center’s website at thecentersd.org. Call the San Diego Pride office. Search online. If you know anyone in the community, ask them. Call 211. Groups can be scary at first but be brave, reach out and give it a try. Even if a group is not for you, get information from someone in the group who you can contact with questions.
Find someone who is willing to help you and work with you. That is your advocate. If someone says they are willing to help, get assistance from them. Don’t think you are bothering them or taking their time. This is most likely the most important time of your life, and there is no need to go at it alone. Finding an advocate is one of the best gifts you can give yourself.
Once you have someone, be clear with what you need. At different times during transition your needs will change. There may be times you need a lot of direction, and other times where you are going along swimmingly by yourself.
It’s kind of like what AA members do for each other, a person finds a sponsor and then they will always have someone to lean on, learn from and be listened to. If after a time that sponsor is not responding to you, or you just don’t vibe with them or something just feels off, it’s ok to thank them and move on to another person. Doing that is called self-advocacy. Really, the ball is in your court. Don’t sit around feeling sad and hopeless, get back in the game and try someone different. Not availing yourself of all possible options can cause depression, anxiety, and hopelessness, and no one wants to be in that space.
What can you expect from a good advocate? Not all those willing to be an advocate will know everything about everything, but they should at least know enough to steer you to someone who can help on the issues that concern you. The person should be kind, understanding, willing to lend an ear when you need it and help you become more involved with the community. They should not be controlling, bossy, closed minded, unkind or have opinions and values that clash with yours. You should be comfortable talking to them, spending time with them and feeling good about the information they may share with you. Make sure you vibe with them and feel comfortable. If your advocate violates confidentiality, that is a huge violation of advocacy trust and I would immediately find a new one.
If you want to become an advocate, you should take it upon yourself to learn as much about the community as possible. Know who the trans-informed physicians are, and who the most knowledgeable gender therapists are. Educate yourself about insurances, especially Medi-Cal. Know the rights of trans and non-binary people and what those rights and protections are – at state, city and federal levels. This website is a great source for learning about medical advocacy: cahealthadvocates.org.
Anyone you designate can be your advocate. They may accompany you to a hospital emergency room, doctor’s visits, and really any facility where you are receiving treatment. Your advocate can make sure you are getting the best care, in a timely manner, with respect and privacy.
By the way, the reason I am sharing this today is because of a recent experience I had at a local emergency room. I was transported to the ER by ambulance due to severe back pain and muscle spasms. A friend followed me there. After answering the doctor’s questions and telling him my pain level was 10, he ordered blood tests. After that initial encounter, I did not see him again until two and a half hours later, when he came to discharge me. I was in so much pain and kept asking for help but I was ignored by the doctor, the nurse and other staff members.
At one point I had to use the restroom, but there was no call button, and when I yelled out for the nurse, I was ignored. I started to try and climb off the end of the bed, and when she saw me, she came running over, yelling at me for trying to get up. She then got me a walker to use to get to the restroom and then just turned around and left me there.
When I got back to the bed she came and helped get me in, then immediately left again before I could ask about something for the pain. I was in so much pain I had forgotten that my friend was in the waiting room. Initially they told him he could not come back to the patient area. Then he was told to give them 10 minutes or so before coming back. Approximately 2 hours later, after I had been crying and calling out for help, they gave me some muscle relaxers. And 20 minutes after that, they gave me morphine for the pain. Another 15 minutes later, the doctor came in and said he wanted to discharge me. So many violations.
I did file a complaint with the hospital, but my fear is that nothing will actually be done. Why was I treated this way? Was it because I was trans? Was it because they considered me a “drug seeker?” I will never know. My friend was there to drive me home and we talked about what could have been done differently. We all need to know that he could have insisted to be let back with me, because he was my patient advocate.
Tell whoever comes along with you to the hospital, doctors’ office, or other medical providers, to introduce themselves as your advocate, because essentially at that moment that is exactly who they are. Do not be afraid to push back against any healthcare professional who is treating you poorly. We have patient rights in every hospital. Know them and protect yourself, know them and be a great advocate for your friends, families, other community members and yourself.–Connor Maddocks (he, him, his) is a Transgender activist, trainer, speaker, and advocate. You can reach him at [email protected].
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