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A Parent Perspecive on Dealing With Ignorance
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One parent gives her thoughts on dealing with people who may not
understand living and interacting with a person with a disability. Tina, a strong
leader in the community, usually has a smile on her face, wit at her side, and a
laugh to share. This page will introduce Tina and her son, Adam; describe some
challenges in being patient as people learn to understand individuals with
disabilities; offer some strategies for dealing with the public; and note the
increase in disability awareness.
A Parent and Her Child
My name is Tina, and my son is Adam. Adam is a beautiful 13 year old with
bright blue eyes and a huge smile. Adam lives with special needs. He was born early,
as a result of his early birth, he lives with multiple medical needs and
developmental issues.
As a parent of a child with complex special needs I have seen people react
many ways when they meet my son. When he was younger, I had a harder time explaining
or reacting to people, but by now I am comfortable in my role as the mother of a
child with disabilities, and therefore I am able to let things go a bit more easily
than I used to. I feel okay about educating others when I am in the mood. There are
times, however, when I choose to be in a “parent” role and not advocate or
educate.
Understanding through Time and Education
I am often amazed at the percentage of our community that just doesn't
“get it." But then, when I really think about it, before I had my son, I may not
have really "gotten it" either. I have to remind myself of just how much I have
learned from my son. There are times when it may be helpful to describe your
feelings and needs to others who may not "get it."
It’s important to take a step back and remember that friends and relatives
whose lives do not revolve around a child with special health care needs have not
had the same incentive to understand. They may make insensitive or uneducated
comments. Keep in mind that they may act this way because they do not have the
knowledge you have. As much as our children with disabilities need understanding, so
do our friends and relatives – to a certain extent. We are not the only ones who
experience human limitations. People need time and education to understand new
things, and even then it might take them a while.
For the first 8 years of Adam's life, we lived in a city in Utah with no
other family around. All of our extended family lived in Florida, Iowa and
California. Shortly after his 8th birthday, his Grandma and Grandpa, Uncles, Aunts
and Cousins relocated to Utah. Over the years it has taken longer for some family
members to warm up to Adam, simply because they do not know what to do with him. I
am happy to say, his Uncles now scoop him up and tickle him (in his own way) just
like they do all of the other kids. They truly enjoy him, but also know when he
wants to be left alone. I have come to see, that for most people, understanding and
acceptance takes time.
Responding to People in Public and Considering Privacy
The ignorance of the general public, however, is another animal. It can be
challenging enough to discuss our children and our lives with the people we are
close to and with whom we have ongoing relationships, but the ignorance of strangers
we meet at the grocery store or at the library, or out to dinner, can be
infuriating.
Many times I have felt like I had to explain to someone why my son was
acting a certain way, or why he has a tracheostomy. Depending on my mood, and how
busy I am, I might choose to answer their questions. When I do have time to answer
questions, I always ask my son if it is okay that we talk about him. His privacy is
important, and there are reasons to talk about his disabilities, but just because
someone is curious is not necessarily a good enough reason in your child's opinion.
Educating the public is important, but it is not always our job in the midst of our
already busy lives.
We just go about our lives most of the time with no problem. Sometimes we
catch someone staring at us, and I usually just smile and nod. I have grown very
comfortable in my own skin, and don't feel like I owe any stranger an explanation,
especially if they are rude. I even have a few come-backs for some of the more
frequent, rude questions we get in public:
- Question: "What's wrong with him?"
- Answer: "Let me ask - Adam, is there something wrong? - He says nope!"
- Question: "Why does he shake his head and flap his hands
all the time?"
- Answer: "He is so happy, he dances all the time."
- Question: "What is that thing in his neck?"
- Answer: "It's called a trach, it's like a nose, but on his neck."
It is not my intention to hurt or insult anyone who asks a question, even
if it seems rude. My answers are simply to make the person stop and think. I feel
like it is ok not to have to explain our situation to everyone. After telling our
story to doctors, nurses, therapists, teachers, and everyone else, sometimes having
a quick, clever answer is just the perfect "easy out."
Disability Awareness
With all of that said, I have to say – it is a good time for disability
awareness. I am seeing awareness, support and understanding more and more in our
communities, on television, and with social media. All in all, there are plenty of
people out there who do "get it". With increased awareness, acceptance, and support,
our children will grow up in a world where disability is no longer considered
different, but the norm.