Every Organization Needs A Superhero!

When Your Biggest Roadblock is Society

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Aug 5, 2014 Advocacy, News, Photography, Storytelling , , , 2 Comments

Tricia always dreamed of having kids some day. Realizing that for most people with a disability, this dream never has a chance to be actualized, she knew it was rooted more in fantasy than reality. That didn’t stop Tricia from dreaming and it didn’t stop Tricia’s instinctual yearning to be a mother either.

Society has yet to think of a woman with a disability as a WOMAN! Expanding on this thought, Tricia states “We are people with hopes and dreams just like everyone else. I have never been one to take no for an answer or let my disability define me. When it came to having a baby, my biggest roadblock was society.”

Tricia with her baby Brielle soon after giving birth in 2013.

Tricia with her baby Brielle soon after giving birth in 2013.

She also had another obstacle…her husband Marshall! He was afraid he would not be a good parent, but Tricia kept on explaining to him that there really is no manual for parenting. Parents just have to do the best they can, research, read, talk to other parents and then hope they make the right choices!

Before they got married, Tricia never really discussed kids very much. Maybe, she thinks, it was because they both thought their lives were complete and kids did not seem to be an essential part of it. Every so often, Tricia remembers bringing up the subject and hoped for a different answer, and finally after eight years together, Marshall finally started to come around. They discussed the possibility with her gynecologist and got his input. Tricia’s gynecologist said she would have to go to a hospital that specialized in high-risk cases like the Winnie Palmer Hospital in Orlando, Florida. That idea seemed reasonable, as both Tricia and her husband were willing to make that accommodation.

In October 2012, Brielle was conceived. Tricia instinctually knew she was pregnant. After the pregnancy test confirmed her suspicions, she made an appointment with her gynecologist. As suspected, Tricia needed to continue her pregnancy care at Winnie Palmer.  Setting appointments at this high-risk pregnancy clinic was like trying to get in to see President Obama, this was just the beginning of the challenges!

At first, Tricia was unaware that this clinic was a residency clinic and every time she went to an appointment she would be assigned to a different resident. Continuity of care is often what decreases stress in medical situations, but each visit brought on a new set of anxieties because Tricia did not know which resident she would be seeing.

Tricia was furious about this and started searching for another doctor. What she found out was that none of them wanted to take on her case because of the high-risk nature. In reality, Tricia was no more high-risk than any other high-risk pregnant woman, but Tricia felt it was her unique way of communicating that made the residents feel overwhelmed. In fact, the only complication throughout the entire pregnancy was a short-lived kidney infection that was cured in a few days time. At that point, Tricia decided she had to be her own advocate. Google and Tricia became best buddies and got through the next thirty-nine weeks! Tricia ate 98% organic produce, and dairy (everyone cheats at times) and made sure to ask lots of questions steering the Winnie Palmer residents in the right direction.

The most unfortunate and least predictable thing about Tricia’s pregnancy experience is the treatment she received from the medical professionals who interacted with her at Winnie Palmer. Tricia experienced a few medical professionals that were just down right rude. One time Marshall could not go with her to an appointment and instead, her Personal Care Attendant took her. That time the resident was really rude to Tricia. He treated Tricia like her baby was not wanted and that Tricia, in her own words, felt like he thought she was “not supposed to be pregnant.” His interaction with her was very abrupt, uncaring and aloof. When Marshall did attend appointments with Tricia, she was treated differently, with more respect and was treated as a woman, a future mother, and someone who had the ability to make decisions in her life.

Some residents and nurses had attitudes like “Who gave you the right to get pregnant?” It was awful, but when Marshall went with Tricia, the attitudes of the residents and nurses were better. Tricia often felt that they thought someone in the group home “knocked” her up and that her baby didn’t matter any more than she did, but with Marshall at the appointments, she felt like she was an empowered pregnant woman. This type of stereotyping needs to stop! Women with disabilities have every right to have a child and be a parent whether society agrees or not!

Before Brielle was about to be born, they scheduled a Cesarean Section date and Tricia’s baby was born at 39 weeks as planned. Brielle came into this world as a beautiful and healthy baby girl at 5 pounds, 15 ounces. Tricia admits she was in a lot of pain! She quickly found out another thing she did not anticipate; that the nurses in her hospital were not trained to take care of a mother with significant physical disabilities.

What made it all worth it in the end was that a few days later, the proud mama and daddy returned home with their gorgeous bundle of joy, someone who would become part of a family Self-Advocacy trio, someone who would help her mother, in her innocent and tender ways, tell the story of the importance of equality, so that we all could benefit!

Brielle playing on a slide in early 2014.

Brielle playing on a slide in early 2014.

 

For more information on Tricia’s ongoing journey of Self-Advocacy, please visit previous posts by Writer Grace Alfiero on this blog site. Sign up to receive new blog post notices at:    http://artsinactionllc.com/blog

-grace alfiero



Comments

  • Richard Chapman
    Aug 11, 2014 at 8:51 pm Reply

    The decision to start a family is one of the most personal decision that a couple will make. After reading this blog post, and also knowing both Tricia and Marshall I am very upset with everything that they had to go through to have a family. How can someone make a value judgment about someone’s family? Is it a healthcare provider, I cannot do this. This is absolutely unacceptable.

  • Amy Woodard
    Aug 25, 2014 at 7:06 pm Reply

    There should be more education for Healthcare providers. I know as a Social Worker it is our task to keep our own opinions out of our practice, although this does not always happen.

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