disabled and pregnant? research opportunity

Are you disabled / chronically ill and pregnant?

The follow is a call for research participants to test a tool. I’m not involved, but it popped up on my radar, but I’m sharing here.

Brandeis University, the Cincinnati Children’s Hospital Medical Center, and others have worked together to develop a new tool – an Accessible Pregnancy Action Plan. This tool would help pregnant people with disabilities think about what they need during pregnancy, during birth, and after having their baby.

They are looking for people between 12 and 36 weeks along in their pregnancies who have disabilities / chronic illnesses and also use English or American Sign Language (ASL) to communicate.

Participants will work on their Action Plan with a peer facilitator, who is also a parent with a disability. These meetings will take place over Zoom. There will be between 2 and 4 meetings.

Most participants will complete the intervention in two sessions. They will be paid $50 per session. Participants who complete the program will also be compensated an additional $50.

Learn more about the study and take the screener here.

screener poster (has all the same information as in the Brandeis link)

Makin’ Babies

Warning: this is maybe going to come off as a rant. I had an encounter with someone (who I perceive to have a horribly negative view of herself and the rest of the autoimmune community) about having children.

Needless to say, I left the support group this person was posting in.

This person posted a question (if by question, you mean opinion phrased as a question) about how she didn’t understand how anyone with this disease and on these medications could even consider getting pregnant. She went on to say that we have no real evidence on how these medications affect fetuses…

And on top of all that, since RA is maybe genetic, how could we consider passing along those genes?

No, I’m not kidding.

Yes, I almost punched a panda in the face.

My panda is sad.

So, after reliving the bits of my childhood spent debating on whether or not I should have children, I casually commented that people stop their medications (DUH) when they’re looking to become pregnant, that they work with their doctors, and that the parents I know who deal with medical issues work together as a team – just like any ‘normal’ couple does – to raise their children.

I also mentioned that the post had offended me and that it really hurt me to think about people coming to that page for advice and help on a bad day to see a post essentially talking about us being horrible parents and worthless. At least, that’s how I felt after I read it. And from the wonderful parents I know with RA and other related diseases, that’s just horse crap.

Apparently, that was a very bad idea to share my thoughts.

A few comments later, I left the group. But not until I mentioned how I was glad that the children I know with these kinds of diseases aren’t a part of this group, and how glad I was that these children weren’t a part of the group and hopefully wouldn’t be able to see what had been said. After all, if it made me feel horrible about myself, what would they think?

Her response? Maybe they would learn something from reading it.

What?!

Children. Wait, no. ESPECIALLY children who deal with an illness full of so much pain and so much suffering should NOT EVER have to consider the the fact that they “should not” procreate because of how horrible their disease is, how incompetent they will be as parents, how their genes have given them no choice but to choose to not have children themselves.

I wish I was able to express how crazy pissed off I am right now. But I just can’t. I just can’t.

Related note: my chest and neck get red when I get mad. Cooooool.

If I have children, it will be because I feel like I can handle children. Yep, that means my disease too, but that is not the only deciding factor. I have good days and I have bad days. But I would expect my partner and I to make this decision together, and to go into it exactly like that – together.

Life is not about feeling like shit because your body does things you can’t control. It’s not about you being unable to do things. If there’s anything I’ve learned from the past 18 years, it’s that life is about finding ways to be happy. And if having a child makes you happy – if the thought of holding someone half you and half your partner – if that does it for you, then you have that baby. You’re going to go through the sacrifices of losing medications for a while and dealing with the physical repercussions afterwards.

You and your family goes through this, not random judgmental pity-party lady. And if that sacrifice doesn’t deter you from having children, you’re going to be one of the best damn parents ever.

And if anyone ever tells you different, you tell them to fuck off and talk to me, maybe not in that order.