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| Jackie Conley, CEO and Founder of DA4U |
Jackie Conley, born on December 15, 1988, with
Spina Bifida, has been living with her disability for her entire life. Spina Bifida affects her in various ways because each case of the condition is different. She is mainly noticed more so in society due to the way she walks, with forearm crutches.
Spina Bifida has affected Jackie in a number of ways. Some fast facts about the way it affects her specifically are:
Her left hip is dislocated
Her left leg is shorter than her right
She has club foot
She does not have feeling from her left knee down
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She then developed
Kyphosis as a result of her Scoliosis
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| Jackie’s left foot, also known as club foot. |
Club foot is exactly what it sounds like, a foot that turns in much like a golf club. For some, both feet are affected when born with Spina Bifida, depending on where the hole occurs along the spine at birth. For Jackie, however, only her left foot was affected. Her right foot is just like any other. You may notice in the picture to the right, Jackie’s left foot is a bit discolored–it is slightly pink and purple in tone. This is because of the low blood circulation in her left leg, due to her inability to put pressure by way of walking on that foot/leg. Another abnormality of her left foot that is apparent in this photograph are her toes that curl inward. This is due to her club foot.
Because Jackie has a foot that would not fit in a conventional shoe, she has a few accommodations that do allow her to wear shoes. First, Jackie has a brace that she slides her leg into, which conforms to her foot. This then slides into her left shoe. Then, to even out her legs so that they are equal length, she pays for a specialist to glue a lift onto the sole of her shoe. Although Jackie needs these accommodations in order to wear shoes, she does not need to wear shoes in order to walk. When she is not wearing shoes, she moves around using only her right leg/foot and crutches.
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| Jackie’s back, an example of Scoliosis |
Scoliosis has affected Jackie more recently than her other difficulties. When she was about 9 years old, Jackie’s posture and walking with a shorter left leg created her Scoliosis. It was then that Children’s Hospital of Philadelphia (also known as CHOP) decided to operate on Jackie. The doctors planned on inserting metal rods on both sides of her spine, as well as taking out and crushing up some of her rib bones to use in fusing parts of her spine to correct the curve. Unfortunately, the procedure failed. First, the surgeons took many hours to operate and could not complete the operation; although, they did get to her ribs. The surgeons tried a second time, and that surgery was also unsuccessful. The doctors took many hours working on the operation, only to somehow let Jackie lose massive amounts of blood, which almost resulted in her losing her life. During this attempt, the doctors also struck a
nervous plexus, which now affects the sensations in Jackie’s back and other areas around her scars. The doctors wanted to try a third time; however, her parents decided that surgery was not going to work, so they refused to let them try. Since then, Jackie’s back has developed Kyphosis, which basically means “hunchback” and is apparent in the photo on the left (see the left side of Jackie’s back).
Currently, Jackie is the National Account Coordinator at TuffWrap Installations. In May 2011, she graduated from Kutztown University of Pennsylvania where she studied English/Professional Writing. While an undergrad, she was the president of the
Phoenix Group, a club dedicated to spreading disability awareness. She also was heavily involved in
Shoofly Literary Magazine, an on-campus publication featuring student work in short story, prose, and poetry. Jackie gained a lot of editing experience working on this magazine. Jackie also was the editor and designer of
The Collage, the College of Liberal Arts and Sciences alumni newsletter. As a student with a disability who was involved as an officer of the Phoenix Group, Jackie has had many opportunities that have allowed her to speak to all different kinds of audiences about her disability and others. This is part of her goal in that it raises awareness about her disability and the other kinds that she has discussed. Phoenix also gave Jackie seniority on campus and thus the chance to mentor younger students who were often new to the university.
