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Zhang, Sarah
ISS
Interviewee: Amy Armstrong
May 3, 2013
A Quest in Progress
People with intellectual disabilities were treated atrociously from the 1600s to 1800s.
Considered no better than criminals and animals, they were amassed, by the hundreds or even
thousands, and forced to live in asylums and institutions (McKissack and Zarembka 91). Over
the years, various advocacy groups formed by parents and friends tried to improve the lives of
people with disabilities, some more successful than others. As a result of protests and
demonstrations, several laws protecting the rights of people with disabilities have been passed in
the United States. The Rehabilitation Act of 1973 prohibited discrimination against people with
disabilities in any activity or company that received funding from the federal government
(“Section 504;” McKissack and Zarembka 96). The Americans with Disabilities Act (ADA)
passed in 1990 broadened the ban against employment discrimination to cover any employer
with 15 or more employees. The ADA additionally bans discrimination against people with
disabilities in public places such as libraries and hotels (McKissack and Zarembka 96-97).
As for the general population’s acceptance of people with disabilities, there’s still a ways
to go – but there are people like Amy Armstrong working towards the universal inclusion and
tolerance of people that have disabilities.
Amy Armstrong was born in 1967, and grew up between Illinois and Missouri. She never
interacted much with “worldly people” because she lived in a tightly knit community with a
common religion. However, this has had a positive impact on Amy’s perception of people with
both physical and intellectual disabilities.
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That’s one thing I can say about the religion I was raised in. Even though it’s
pretty contained and isolated, everyone was your brother and sister so you were
raised with respect towards everyone. (…) We had, that I can recall, a little girl
who had Down syndrome, (…) and her sister had -- looking back on it today, my
guess is -- cerebral palsy. (…) There were triplets that had skeletal dysplasia (…)
When I went to work for the airlines, I was really exposed to more of a global
audience of disabilities and different kinds of disabilities. It was okay for me
because I didn’t really mistreat anyone or think of them differently.
Yet even with her upbringing Amy never really knew what people with disabilities and
their families went through until she had her second child, Larkin. Later, she would comment on
the difficulty of explaining why certain privileges were given to people with disabilities at the
Champaign County YMCA, but not given to other people.
I think the biggest, most exhausting part of it is educating people on what we do
and why we do it. You just simply can’t understand it. Either you have to spend
an hour with me, or (…) have a disability. (…) I got it by trial by fire.
Larkin Armstrong was born on October 4, 2005. Mere hours after her birth, Larkin was
taken by hospital workers to have her limb proportions measured. Amy was terrified that Larkin
would be diagnosed with skeletal dysplasia, because she knew how painful it was for the triplets
she grew up with to walk and go through surgeries. Three weeks after Larkin’s birth, Amy and
her husband received news from the doctor.
She [the doctor] said, “Larkin has Trisomy 21 (…) it’s the most common form of
Down syndrome.” I was like, “Oh, okay. I can cope with that.” I mean, for me,
Down syndrome was nothing. (…) I was looking at my biggest fear and they gave
me something that was just something so part of life (…) This is (…) the first
time that I can pinpoint that I became an advocate. (…) My husband’s stomach is
going up and down. I can see that he is in distress, struggling to catch his breath
(…) Everything was okay and now it’s not. And for me, it was going to be worstcase scenario and now it’s okay, so we flipped.
Amy’s relief was justified. By 2005, the Rehabilitation Act of 1973 had already been
passed, and Section 504 of that act was understood to guarantee children with disabilities could
receive a free, appropriate public education (“Section 504”). Part C of the 2004 Individuals with
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Disabilities Education Act (formerly called the Education for All Handicapped Children Act and
first passed by Congress in 1975) requires early intervention services to be available in every
state and territory in the United States, so Larkin would be eligible for early intervention services
if she needed them (“Overview of Early Intervention”). There were also many summer camps
and school programs specifically designed for children that had Down syndrome, because that
particular disorder was relatively well-known (Sander).
It wasn’t over just yet. For four months, Larkin was developing at a typical rate. Then
suddenly, Larkin’s behavior changed. Amy thought that maybe Larkin didn’t like her anymore.
She drifted away. The light went out. She wouldn’t play with her toys, and she
wouldn’t grasp anything. She would not look at you. (…) She had a startle.
[Larkin’s hands would go out if you moved her too fast.] (…) So we took her in to
see Doctor Hill [Larkin’s pediatrician], and while we were there she had one of
these spasms, if you will. He went down the hall and within three minutes we
were in an EEG (…) and they wired up my baby’s brain. And I knew by the ways
the techs were acting it was bad. (…) That’s when they diagnosed her with
infantile spasms, or I.S. -- West syndrome.
Seizure disorders are much more common in people with Down syndrome than in people
without it. An estimated eight to ten percent of people with Down syndrome have some form of
epilepsy, and unfortunately, Larkin was in that eight-to-ten percent. Infantile spasms have to be
recognized and treated as soon as possible, because seizures often cause cognitive and motor
development to slow, stop, or even be lost (Pueschel). Amy had a choice: to treat or not to treat
Larkin’s epilepsy. She had a choice – but, as Larkin’s doctor noted, she didn’t have a good one.
The treatments started, and the treatments were harsh. I was learning to inject my
child, my baby, in the leg twice a day with a medication that was either going to
kill her or help her.
Larkin’s treatment took the form of adrenocorticotropic hormone (ACTH). ACTH has
been known to help control even the most difficult cases of epilepsy, and even improve
developmental status. It wasn’t without its risks, of course – possible side effects included an
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increased appetite and subsequent weight gain, infections, high blood pressure, and bleeding in
the stomach and intestines (O’Dell). But the risks didn’t outweigh the possible benefits, and that
allowed Amy to follow the advice of her friends and give Larkin ACTH shots.
Before Larkin’s second diagnosis, Amy would have been perfectly content in a Down
syndrome support group. Afterwards, though, Amy wanted to find an epilepsy support group or
other parents that had a child with epilepsy.
Well, there is no organization for epilepsy. There is a broader audience online,
and that’s where I turned -- to the internet. I found two parents on the East coast
that also had children with Down syndrome and epilepsy (…) But they were very
trapped in grief and I’m not. I couldn’t find anybody who could give me a
positive outlook or at least say, “Let me help you; there’s a light at the end of the
tunnel.” (…) I started realizing that that was going to be my calling -- to help
families – because nobody was there when I needed it.
Since 2006, Amy has been finding parents in online communities that are worried about
their children’s diagnoses. She gives them her phone number and instructs them to call her.
I tell them, “Look, there’s a light at the end of this tunnel, and we are at the other
end of it. Please don’t look at Larkin as your outcome, because it’s not typical.
None of our kids are ever the same, which is also a reason for the pain because
you can’t look at one child and say, ‘Mine’s going to be like that’ or, ‘Mine’s
going to be better’ or, ‘Mine’s going to be worse.’ You just don’t know.” (…)
Parents want to hear from another parent who’s been in the trenches, who has
fought the demon, and is still continuing to fight this. (…) I help them understand
that what they are doing is the very best thing they could be doing for their child.
And then give them options, or connect them with local organizations. (…) I find
out where they are located geographically, and I connect them with either doctors
or other families.
Similarly, the new Champaign County YMCA provides networking opportunities for
families caring for people with disabilities (Armstrong, “Accept Play Grow”). This isn’t a
coincidence. Amy Armstrong had an important role in the design of the new YMCA, and it all
started with a music class Larkin took at the Champaign Park District.
Her [Larkin’s] developmental therapist wanted me to put her in a music class that
the park district was running. So I signed up and I paid my 75 dollars, and I took
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her to this class. (…) I went three times, and I left every time sobbing and feeling
like a failure – (…) the transitions were too fast, the music was too fast, and there
were too many songs. (…) I called the park district and I said, “Do you think you
could tweak this? Do you think you could maybe change this to where we only do
one song -- and everybody works on it together, and we slow it down?” (…) “No,
we’re not going to change that.” “Okay. You’re not going to change the
programming. All right.” (…) Then a friend of mine was looking for a project,
and (…) I typed out, “This community needs a recreational facility designed to
support people with disabilities and their families,” and I hit send. And she fired
back in about thirty seconds, “That sounds awesome. I’m all in.” That’s kind of
where the idea was born.
The “idea” turned into Larkin’s Place, because the fundamental question was that of
where Larkin could fit in and belong. It’s not a room in the YMCA, it’s not a section of the
YMCA, and it isn’t a synonym for the YMCA. Larkin’s Place was an approach to designing and
building the YMCA that would allow the YMCA to serve all members of the community,
regardless of ability.
Because of Amy’s influence, the new Champaign County YMCA has a universal design.
Wall decorations, furniture, and equipment are of muted colors to avoid overstimulating people
that get seizures from looking at too-vibrant colors. There are large windows to let in as much
natural sunlight as possible, so people’s heads don’t hurt from excessive exposure to artificial
lighting. Most of the flooring is made of rolled rubber so it doesn’t hurt as much if anyone falls
on it. The YMCA’s programming allows it to be a place for recreation that is sensitive to the
needs of people with disabilities, but also isn’t just for people with disabilities; it’s open to
everyone in the community (Armstrong, “Accept Play Grow”). Many people don’t even notice
the little things that make the YMCA accessible. It’s not hard to imagine how easy it could be to
build or modify every other building with a universal design in mind.
Historically, it’s been pretty bad for people with intellectual and developmental
disabilities, but things are changing for the better. The United States government at both the
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state and federal levels now helps caretakers of people with disabilities by guaranteeing that
children with disabilities can get a free, appropriate public education, and the availability of early
intervention services (“Section 504;” “Overview of Early Intervention”).
But there are a lot of competing demands for government attention and public aid funds,
and few people are ready to pay higher taxes. The government also has to spend its resources on
things like medical aid and job creation. That leaves families with people that have disabilities
with the task of paying for insurance and certain early intervention services (depending on state
policies) by themselves (“Section 504”). And once children with disabilities finish their
education, they may still need care and support transitioning to adulthood. It’s what needs to be
done, but it’s exhausting. That’s why communities need accessible facilities like the Champaign
County YMCA – so that caretakers can take a break from their responsibilities and everyone can
fully participate in recreational activities. With the ever-continuing work of advocates like Amy
Armstrong and organizations like the YMCA, we are on our way to experiencing what it means
to be part of a community that is truly open to everyone.
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Works Cited
Armstrong, Amy. Interview by Molly Rose Newman-Johnson and Serena Jing Cai. 8 Feb. 2013.
Armstrong, Amy. "Accept Play Grow." Larkin's Place. YMCA, 14 Nov. 2010. Web. 10
Mar. 2013. <http://www.larkinsplace.com/accept-play-grow/>.
McKissack, Patricia, and Arlene Zarembka. To Establish Justice: Citizenship and
the Constitution. New York: Alfred A. Knopf, 2004. Print.
O'Dell, Christine. "Basics of ACTH Therapy." Epilepsy Therapy Project. Epilepsy
Foundation, 16 Sept. 2003. Web. 11 Mar. 2013. <http://www.epilepsy.com/>.
"Overview of Early Intervention." National Dissemination Center for Children
with Disabilities. National Dissemination Center for Children with
Disabilities, Dec. 2012. Web. 15 Mar. 2013. <http://nichcy.org/babies/
overview>.
Pueschel, S. M. "Infantile Spasms in Children with Down Syndrome." National Down
Syndrome Congress. National Down Syndrome Congress, n.d. Web. 11 Mar. 2013.
<http://ndsccenter.org/>.
Sander, Sarah. "About Down Syndrome Amongst Us Magazine." Down Syndrome Amongst
Us. Down Syndrome Amongst Us, n.d. Web. 11 Mar. 2013.
<http://www.dsau.org/About-DSAU.aspx>.
"Section 504 of the Rehabilitation Act of 1973." National Dissemination Center
for Children with Disabilities. National Dissemination Center for Children
with Disabilities, Apr. 2012. Web. 14 Mar. 2013. <http://nichcy.org/laws/section504>.