Posted September 30, 2010

By Lou Baldwin
Special to the CS&T

Mary Ann Hildenberger, who is president of Philadelphia’s Catholic League for Persons with Disabilities, was born at the former St. Mary Hospital in Philadelphia’s Kensington section 60 years ago. But her mother, Rita Hildenberger, didn’t get to see her for five days. A nurse brought her precious baby wrapped in a blanket and told her she could feed a bottle to the little one. If she wished, she could open the blanket to see her. Of course, she did that.

She was shocked to see her baby was born with misshapen, undeveloped arms and legs. No one had told her.

“I was born with severe arthrogryposis congenital flexia. When I was born my legs were bent up into me and my arms were bent up,” Hildenberger said.

It’s irreversible and although some steps could be taken during her childhood to alleviate the condition, the net effect is she has virtually no use of her four limbs and relies on family and friends for tasks that are second nature to most people.{{more}}

Whenever her complex electric wheelchair needs repair, it is difficult for her to even leave the tidy house in St. Anne Parish she shares with her mother, where she has lived almost all of her life.

Very early it was suggested to her parents that their child should be institutionalized, but they wouldn’t hear of it. Nevertheless, great swaths of Hildenberger’s childhood were spent at Shriners Hospital of Philadelphia where she underwent no less than 40 surgeries.

“The hardest thing growing up was surgery day,” Hildenberger recalls. To this day she has a phobia against something covering her face because it brings back frightening memories of the anesthesia masks that were then in use.

Also hard for her was being away from her parents and younger sister, but rules were strict; visiting at Shriners was very limited and totally forbidden in the winter months.

If this seems unnecessarily harsh there was good reason. In that era before the widespread use of antibiotics and other modern medications, a stray infection introduced to a hospital for children with disabilities could have been disastrous.

“I was one of the first to have hotmail,” Hildenberger joked. “Even my mail had to be sterilized before I got it.”

Most of her schooling was done at Shriners or the Widener Memorial School, which focuses on children with disabilities, or at home by a visiting teacher. She was never mainstreamed with children without disabilities.

“I never got to go to my prom, but I never thought about my prom because it was something I knew that I couldn’t do,” Hildenberger said. “Although I have so many disabilities outside, inside I never felt disabled.”

Even her sacraments were differen. Because she could not go to a parish CCD class, Oblate of St. Francis Brother Arthur Kerns walked from Northeast Catholic to her home at night to catechize her, and she actually received her first Communion at North Catholic.

In spite of her disabilities she had many friends, and if they went to the movies she couldn’t go with them. She accepted that too.

As for these things she missed out on, “I always say when you are born with a disability you can’t miss what you never had,” she said.

In contrast to her physical disabilities, “God gave me a great brain; it has enabled me to invent things for myself for things I couldn’t do,” she said. “I used to be able to write and type, but as I’ve gotten older I can’t. I write everything with a pen in my mouth.”

The emergence of computers has been a great boon for her. As an adult she attended Community College of Philadelphia where she obtained an associate degree in data processing in 1983. The experience of sitting in a classroom with men and women without disabilities was exhilarating.

“People wanted to help and they asked questions. I don’t mind questions if they aren’t dumb,” she said.

Hildenberger continued on to Temple University for a bachelor’s degree in business administration. When it came time for graduation at the Spectrum she was informed the rules would not permit her wheelchair on the floor with the other graduates. She vehemently protested and Temple had her wheelchair brought on to the stage with the dignitaries.

“I’m an advocate for people with disabilities,” she said. “If something can’t be done, fine. But if it can be done, do it.”

She is also a graduate of the Church Ministry Institute at St. Charles Borromeo Seminary and a former member of the pastoral council at St. Anne Parish. Although her mechanized wheel chair made it possible for her to come to Mass at St. Anne’s, it was too heavy to bring down the steps to the lower church, the most accessible place to participate in the Mass. So she had to observe looking through the doorway from the top of the short flight of interior steps in the vestibule.

It was in the aftermath of a disability awareness program, which she arranged for the parish, that the schoolchildren initiated a can collection drive that provided the seed money to have a ramp installed to make the lower church completely accessible. Thanks to other funds raised, support from parish pastor Father Joseph Brandt and volunteer labor from union members, the ramp became a reality and was dedicated last November. Now Hildenberger as well as other people with disabilities and even elderly parishioners have full access for Mass.

Her ambition now is not only to participate but to become a greeter for the Mass. As president of the Catholic League for Persons with Disabilities for the past three years her thrust has been to raise greater awareness of the group among people with disabilities and also to raise the consciousness of the Catholic community as a whole to the special needs of people with disabilities.

Until recently the group, which usually gets more than 50 members to a meeting, was gathering at St. William Parish, a welcoming parish where most facilities were handicapped accessible. At this time they are hosted by St. Katherine of Siena Parish in the Torresdale section of the city, where recently constructed facilities are completely accessible, including a newly installed bathroom designed for people with disabilities.

“We are working to have the whole spectrum of people with disabilities recognized,” Hildenberger said. “Everybody is God’s child.”

Retired Auxiliary Bishop of Philadelphia Robert P. Maginnis will be the principal celebrant of the annual Mass and Communion Luncheon of the Catholic League for Persons with Disabilities to be held Sunday, Oct. 17, at Rosewood Caterers, 8888 Frankford Ave., Philadelphia. For further information call 215-333-3111.

Lou Baldwin is a member of St. Leo Parish and a freelance writer.