See how Martha and Jaz Siravo, a disabled mother and daughter, get ready for school in the morning.
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Martha attaches Jaz’s leg braces in the morning. Jaz doesn’t need the braces to walk, but it makes navigating life outside of the house easier. “Getting those braces on lets me know that she's good for the day, like she can now do anything else that we need to do,” Martha said.
“If you meet someone with cerebral palsy, you've met one person with cerebral palsy,” Martha Siravo said of her daughter, Jaz, above, who has also been diagnosed with epilepsy and a developmental disorder. “You have no idea what the other person is going through, and it's unique to them.”
Jaz and Martha make their way through a hallway at West High School. Their different disabilities require each to have her own “access plan.” Jaz can handle stairs by herself, while Martha requires an elevator to get up floors.
Martha watches as Jaz pumps gas with the help of a friend. Getting gas is a challenge for Martha, since there isn’t enough room between her car and the pump to exit with her wheelchair. “This is an opportunity for independence,” Martha said of Jaz. “If we can get her to get it down like, this is our routine, we won't need to call anybody …. There's just a lot of button pressing, things like that, but she's very capable of doing it.”
Martha looks on as Jaz undergoes physical therapy. “I don't know what she's going to do … she's still figuring herself out, and I have no expectations,” Martha said of Jaz’s future. “She says that she wants to work at Culvers, or she wants to be a teacher and stuff like that …. I just want her to know that she can explore options, not feel limitations that others might be putting on her.”
Jaz, dressed as a clown, waits as her friend Adriana fetches candy for her from a house on Halloween.
Martha holds Jaz’s hand after a seizure triggered by her epilepsy. Jaz doesn’t have seizures often, but when she does, they knock her out. The Siravos used to go to the doctor after each episode, but Martha has learned to help her recover by just staying calm. “Getting heightened in a situation like this does not help anybody, and it definitely doesn't help us move forward,” she said.
Martha stretches before practicing an aerial dance routine, which she said offers her a true escape from the trials of daily life. “That’s my space for not having to be so enveloped in all the things that require a lot of parenting, a lot of adulting, a lot of responsibility,” she said. “You literally get to leave those things kind of at the door.”
Jaz and Martha fly through the air while doing aerial dance together. “There’s a lot of things that we can't participate in together,” Martha said. “But the things that we can do while we're just suspended in the air are totally different. It's fun and relaxing. It's navigating my disability in a way where it actually gives me an ability to do other things. It doesn't make you focus on your limitations.”
Martha prepares breakfast before waking Jaz up for school. The two live in subsidized housing for people with mobility issues. Adapting to life after her car crash was traumatic, she said. “You have to accept a new sense of normal to figure out how to live life in a way that allows you to be the person that you want to be,” she said. “I didn't experience any type of limitations (before the crash), so to flip over from one to the other, it was mostly in my very positive outlook that helped keep me driving forward.”
Martha finds her spot at a Madison School Board meeting. She ran on a platform of improving learning environments for those with special needs. “Being part of the board makes me able to talk about the whys in rooms where it needs to happen,” she said. “You can only get so much done being an influencer when you're not in the room.”
Martha and Jaz show their support for disabled students at a swim meet at West High School. The swimmers were the subject of controversy after they were forced to try out and were subsequently cut from the team, despite being allowed to swim in previous years. The swimmers were allowed on the team after the school rethought its decision. “I'm a para-athlete and tried a lot of different stuff, and I love seeing it when adaptive athletics gets to be within spaces of peers that don't need any adaptive needs at all,” Martha said. “Because we're in school, we should be learning from all those around us.”
Martha teaches Jaz to play “Twinkle Twinkle Little Star” on the piano with her right hand. Jaz was born without the ability to use her left hand, while Martha lost control of her left hand after her spinal cord injury. “It's kind of cool that we have something that is incredibly unique, but caused by two very different things,” Martha said. “Maybe it was like ‘a meant to be’ kind of thing, like, ‘I know exactly what you're going through.’”
Sunlight bathes Martha as she watches as Jaz gets ready for the day. Early in Jaz’s life, Martha worried about what other parents might think of her parenting but said the pair’s respective disabilities have only strengthened their bond. “We don't coast through things,” she said. “There's things that just have to happen a certain way, things that get in the way, medical stuff that happens. I love the connection that we have, even if sometimes there's a lot of stress that goes into that.”
Martha applies acne treatment to Jaz’s face before bed. “I want to put good things out there, so Jaz and I try to exude that out there. And I think when that is what resonates with people, hopefully that's something that speaks louder and lasts longer than if someone just goes about life in a very negative way and considers everything a burdensome challenge.”
