Happy Birthday Heather! #ADA25

Heather is surrounded by many colorful, reflective, mylar balloons, some saying "Happy Birthday"

Birthday Balloons

dark haired newborn infant with head tilted to the side and noticeable craniofacial differences

Heather as a newborn

Today Heather is 25. She was born the very week the Americans with Disabilities Act was passed on July 26, 1990. As a child with multiple disabilities, the passage of the ADA meant she was going to have a very different life than disabled children born a generation before.

Heather was born in a small Florida town where, upon her birth, the doctor called her “it” in her medical records, and called her “a Mongoloid infant.” It was as shocking to read those records when I received them in 2000, as it is now, 25 years after he wrote those words.  Heather had the typical craniofacial features of her genetic syndrome at birth, and was quickly transferred to a larger hospital, where days later, she was diagnosed with cri du chat syndrome.  Her biological parents were given incorrect information about per prognosis and life-expectancy at birth, and as a result had a very disadvantaged start to life.  Notwithstanding the rough start, Heather was benefiting from the promise of the ADA.

Heather has multiple disabilities.  She has a severe intellectual disability, multiple physical disabilities, is a little person, and is deafblind.  She uses a manual wheelchair, is non-speaking, does not read or write, and uses a feeding tube for nutrition. The promise of the ADA has enabled her to have a rich life.

A smiling larger adult woman in a power wheelchair wearing a blue dress with her arm around young girl in a manual wheelchair wearing a green flowered dress

Heather and Carrie outside the courtroom for Heather’s adoption finalization July 9, 2002

When Heather went to foster care, she was placed in a home, rather than an institution because the ADA mandated that she be served in the most integrated setting.  When I, her biological aunt, sought to be her foster parent, the ADA allowed the court to force her social worker to place her with me, despite my own disabilities.  Renovations prompted by the ADA meant the courtroom where her adoption was finalized was wheelchair accessible, and the ADA allowed her to have a sign language interpreter at her adoption hearing.  The promise of the ADA meant she had a forever family.

The combination of the ADA and the Individuals with Disabilities Education Act (“IDEA”) meant she was able to attend school alongside her peers.  By later elementary school, she was able to attend a K-8 school in an integrated classroom, in a renovated historic school building — renovation prompted by the ADA’s mandate.

Teen in a manual wheelchair in the front row behind home plate at Coors Field in Denver

Heather at a Rockies Game in the front row home plate seats.

In high school she was able to watch her cousins in the marching band from the accessible stands at the football field — stands that were not accessible when I went to that same high school — stands renovated due to the requirements of the ADA.  The promise of the ADA allowed Heather to be educated alongside her peers.

Heather loves watching dance, and ballet is her favorite.  When a newly renovated historic opera house that housed the local ballet company had serious access problems making it impossible for wheelchair users to access accessible seats, Heather joined a lawsuit to force the city that owned the opera house to comply with the ADA.  Heather also loves to watch baseball, and when the front-row accessible seats that allowed Heather to watch the game with her limited vision were removed, Heather joined a lawsuit to force the baseball team to put the accessible seats back. The promise of the ADA was realized when Heather got to assert her rights, and access the recreational activities she loves.

A young girl and a woman riding a fish theme park ride

Heather riding a theme park ride

Heather travelled to Florida, and like so many other children, she got to ride her favorite rides, because the ADA required the theme parks to create access to the rides. Heather rode the historic Durango Silverton Narrow Gauge Railroad through Colorado wilderness in a train car that has been made accessible due to the mandate of the ADA. Heather goes to zoos, botanic gardens, and museums, knowing that she will be able to park and get out of her van, get into the facility, move around the exhibits, and use the restroom all because the promise of the ADA has been realized.

A small woman sitting in a camp chair watching a campfire while holding a green tambourine

Heather watching the campfire at Jackson Lake State Park

Heather loves to fish, accessing great spots to drop a line that have been made accessible due to the requirements of the ADA.  Heather loves to bowl, and goes bowling with the adaptive recreation program our town offers because the ADA requires the town to make the recreation programs accessible to people with all types of disabilities. Heather has joined her younger sister swinging in the park, because the local park has an accessible playground.  Heather loves to go camping, being able to access an accessible yurt, or tent site that allows her to get to her tent, access the restroom, or approach the firepit for her favorite camping activity — fire watching.  The promise of the ADA is realized when state and local governments provide program access to anything that public entity does, including developing parks and trails, administering recreation programs, and building facilities.

A smiling Heather Lucas sitting in a chair in front of a rack of DVDs

Heather Lucas in sitting in her living room

It is most evident how much the ADA has changed the lives of people with intellectual disabilities when seeing it’s affect on how and where Heather lives.  Heather requires support in all parts of her life, from communicating, moving from place to place, getting dressed and going to the bathroom, and eating.  Heather is not rich.  She lives on an income that is below the poverty level.  She receives Medicaid help with all these parts of her life.  She receives this help in her home because it is the most integrated setting to receive help. She is not forced into an institution to get help. She is not forced into a nursing home to get help. She is not forced into a group home to get help. She gets help in her own home, with the roommate of her choosing (her younger sister).  She can decide when she wakes up, when she goes to sleep, and how she wants to spend her day. She lives in her own home, with the support she needs to be independent.  This is the true promise of the ADA realized.

How the world is different for this twenty-five year old woman. The world is a very different place for a disabled woman twenty-five years after the passage of the ADA. While there is still much work to be done, Heather is living the promise of the ADA.  Happy birthday Heather!

 

 

 

 

Share Button

Trackbacks

  1. […] My story had a happy ending.  Heather eventually came home, it’s been over 15 years, and she is doing fabulously. […]

  2. […] her sister, Asiza spends several days a week at our local recreation center, participating in adaptive […]