Lucas Camilo

Today is the 20th anniversary of the signing of the Americans with Disabilities Act (ADA).  The civil rights legislation was meant to transform our country by making it illegal to discriminate against people with disabilities (officially around 50 million Americans have some kind of disability).  Today many people take for granted some of the achievements related to accessibility in public buildings, transportation, and other outdoor spaces.  The three of us already benefit from curb cuts (good for strollers, bikes and wheelchairs!) and wide doorways.  There was a 5-minute piece about the ADA on Free Speech Radio News talking about the achievements and shortcomings of the legislation so far.  Clearly there’s still a long way to go.  For example, the unemployment level for people with disabilities is at about 50%, the same as it was 20 years ago.  Here’s a good website that talks more about the 20th anniversary.

Some of the cultural transformations around access and discrimination are happening, though.  There was a short interview on NPR with an architect who talked about a philosophy of called “universal design.”  She explained that in designing a space architects shouldn’t think about people in two groups (abled/disabled), but as a whole variety of ages, sizes, shapes, and abilities.  Some people are taller and need taller chairs and desks.  Some people have vision impairments and need bigger fonts.  Some people are young or old or otherwise unable to climb stairs.  And on and on.  At least in the short interview it sounded like a good step toward complicating the superficial abled/disabled binary.

It was a fitting day for Burke to meet an amazing man named Harold Gomes who has a neuromuscular disease called Duchenne Muscular Dystrophy.  Harold in the cousin of an equally amazing young man named Yves who is scheduled to be deported on August 13.  Yves’s family was being interviewed as part of the latest “We Are America” stories project video shoot that Burke organized.  It just happened that Harold is part of this family from India that has been fighting the deportation of Yves, who came the the United States when he was 18 months old, and recently graduated from high school.  It’s a tragic story that points to the absolute injustice of our immigration system… and you’ll be able to see it soon once the video is online.  But in the context of this blog post it was Harold’s story that hit close to home.   Harold is a thoughtful, articulate, passionate man who works as a graphic designer, has studied the intricacies of the immigration system, and is a great example of someone who is able to interact with the world around him — at least in part because of the Americans with Disabilities Act.  Harold uses a wheelchair, has a tracheostomy and needs a ventilator (the same LTV 950 as Lucas) 24 hours a day.   Harold’s parents were also on hand for the shoot, and Burke showed the entire Gomes family Lucas’s blog, while talking shop about vent settings, trach changes, and home nursing agencies with Harold.

Another big development  has been getting to know — more personally — other families with children who use traches and vents.  On Saturday Krista talked with Amanda, a mom of a kid with MTM that we’ve emailed with.  Her son is eight years old, he goes to school, uses a wheelchair and ventilator, eats chocolate ice cream every once in a while, uses a g-tube, likes TV and video games, and was talking to his mom in the background as she and Krista were on the phone.  We took notes as Amanda told us about their first years experience with everything from sign language to blenderized food, from Medicaid eligibility to research on Myotubular Myopathy.  Amanda was part of the group of families that organized the first ever MTM gathering last summer, a gathering we hope will happen again so we can meet her and other families and continue to build these amazing, unexpected relationships.