My mother-in-law, Dorothy Gauchat, bless her, wanted to have her homes that she started at Our Lady of the Wayside be “homelike”. So she bought beautiful bedspreads, colorful curtains and filled the halls with Gretka Momsen Domer’s delightful artwork of children. She was irritated if her homes were thought of as institutional, but when you get a mass of children, or adults, all with varying disabilities in the same place, you need a mass amount of people to assist with carrying out the “activities of daily living”. And that mass amount of people can’t be parents – all the time, day in and day out – as is the case in our typical individual and family homes. Since there is hiring and firing and shifts involved – in reality it IS an institution, maybe not as gruesome as the state-sponsored ones of the 60’s and 70’s, but an institution none-the-less.
Surprisingly, out of this institutional living at Our Lady of the Wayside Children’s home has blossomed a magnificent life in the form of Nina Demci. Nina, the “loudmouth” of the children’s home has been my go-to person in discussing the issues of marriage to someone with a disability and, since she became a mother herself, rearing children. We have gone through much of the same joys and heartache since her daughter, Katie, is the same age as our sons. She’s been a shoulder to cry on and a spirit to laugh with – an amazing woman to me. Although we live on opposite sides of Cleveland, with iffy transportation and limited time constraints, we have kept in touch over the years.
Although technology has made her life easier to connect to others via the internet, Nina moves around her apartment and the community in her Pride Mobility wheelchair (an upgrade from the old E&J and Invacare chairs that Todd used), living independently in an apartment in Parma that she has modified to fit her specifications. Since Katie has moved out, Nina fills her life with political activism and connecting with people in the community. She currently does not have a paid job, but she manages her ability to get out and about like a business. Needing to navigate a world that is only slowly becoming wheelchair accessible takes a lot of planning. I sense a feeling of accomplishment from her – from an amazing life that she has promised to write about in this blog – in installments.
Nina is strong-willed and a creative problem-solver, which is the key to her managing an independent life. In her witty and somewhat sarcastic way, she meets those around her with humor aimed to both educate and declare her sense of equitability with others. This is her passion – “to be seen as equal, not sub-intelligent.” When I asked her how she did this, she said it was much easier to deal with kids, who are more direct and unfiltered. Adults just stare or avoid, probably either fearful, or not wanting to be rude or mean. Yet, she wishes people could just get past the initial surprise of seeing someone with osteogenesis imperfecta and dwarfism, and get down to the business of establishing a relationship.
To help those who don’t know Nina, we collaboratively created a short introductory video, so that you adults have the chance to ask those “kid questions” without having to go through the discomfort and social awkwardness of seeming to be rude. After you watch this, maybe then, we can get down to the business of establishing an equitable relationship…