What it's like to be invisible
This blog first appeared at https:// usodep.blogs.govdelivery.com/2015/09/10/what-its-like-tobe-invisible/
Ahhh… Invisibility. It’s one of those superpowers we
dream about as kids and, let’s face it, as adults too. How
often do we wish we could be a fly on the wall, to listen
in on conversations, to see what people are like when
nobody’s looking? “To be invisible,” we think, “now that
would be cool!”
Well, for those of us with invisible disabilities, being
invisible is not always as great as one may think. On the
one hand, no one can tell if we have a disability just by
looking at us. And for those who face visible disabilities, I
can only imagine how difficult that must be. Yet for those
faced with an invisible disability, it can be difficult for us in
school or the workplace to not feel understood as we deal
with our own health issues. Many people see us as able bodied adults, and wonder why we can’t work an extra few
hours, why we take so long doing problems or taking an
exam or why we can’t pull our own weight. In short, it can
be a very confusing and lonely experience.
According to the American’s with Disabilities Act, enacted
in 1990, a disability qualifies as “a person who has a
physical or mental impairment that substantially limits
major life activities; has a record of such an impairment; or
is regarded as having such an impairment.” Some of the
major life activities include:
- Caring for one’s self
- Performing manual tasks
- Walking
- Seeing
- Hearing
- Speaking
- Breathing
- Learning
- Working
In the case of invisible disabilities, some of these
major activities may be compromised occasionally, or
intermittently depending on the nature of the disability.
Thus, the distinction of having, “a record of such
impairment,” is key. In this case, the law helps people
who, while they may not be impaired at a given moment,
their condition may have, or could result in their inability to
perform major life activities. These may include learning
disabilities, mental disabilities, and whole slew of chronic
conditions that can strike anyone, anywhere, at any time.
For me, having epilepsy qualifies as a disability under the
ADA. Although most days I look and am able to act without
an impairment, when I have a seizure major life activities
are definitely in jeopardy, as I lose consciousness, stop
breathing and lose control of my body. Even after my
seizure ends, I physically look fine, though my mind is in a
haze and I have difficulty with memory, vocabulary or other
cognitive symptoms – often impacting my ability to learn
and work. It wasn’t until my last seizure I realized how
frustrating it was. During my most recent seizure I fell on
a hard, tiled floor. After my ER visit my arm was in a sling,
my face was bruised and I had a nice batch of stitches.
And in an odd way, I was glad because for once I felt like
my physical appearance mirrored just how battered my
brain felt.
The thing is, it shouldn’t have to be this way – to be glad
that one’s invisible disability is visible in order to get the
help one needs. So what can be done then? What do we do when we are faced with the “gift” of invisibility?
How can we as students or workers get the help we
need without putting ourselves at risk of discrimination?
I believe the only way is to be more public about our
invisible disabilities, and to take steps on educating the
public exactly what that means, and how others can help.
Below are a few steps I have found to be helpful in my own
journey:
Tell your employer about your disability
In my own life, I have had to deal with the question of
whether or not to tell my employers about my epilepsy.
When I was diagnosed I was working at a major consulting
firm, and after a grueling few months of burning the candle
at both ends, I had a seizure. I was told by my doctor
that there was no way I could continue the hours I had
without putting myself at risk for more seizures. But I was
loathe to seem like I couldn’t do my job like everyone
else. So what did I do? I used every resource that I had in
hand, including a few friends who work within the disability
world. They helped me recognize that epilepsy was
covered by the ADA and that I had the right to “reasonable
accommodations” to do my job.
In going in to talk to my bosses and my HR representative,
I requested “reasonable accommodations” in the form
of a regular (i.e. 40 hour) workweek and minimal travel.
And due to the protections afforded by the ADA, my work
was more than happy to comply. I also decided to tell the
people I worked with, so that they knew how to help me
if I had a seizure. But before I did any of this, I had to do
my homework, understand the law, understand my job and
ultimately become my own advocate.
Manage your life to have the balance you need
and recognize your very real (though occasionally
frustrating) limitations
At my job, I mentioned that they were able to provide me
reasonable accommodations in the form of reasonable
hours, limited travel and so on. However, as I moved on
and up in the firm, more came to be expected of me. The
firm kept waiting for me to get “back to normal” and I was
having a more difficult time explaining why I could not buy
into the corporate culture. Ultimately, I recognized that
while I could do my job well, given my very real limitations,
I could not be as successful as I, or the firm, wanted me to
be in the future. I decided to leave my job for one that was
still challenging, but not nearly as stressful. It was one of
the toughest choices I made to leave a lucrative career…
but it was worth it!
Thus, finding the right job that will work with you, and not
expect you to “return to normal,” is hard to find, but very
much worthwhile. The world rewards workaholics, super
moms and super dads and people who “stand up in the
face of adversity.” And I am one of those type-A people
who want to be the best. But I’ve had to learn to respect
my body, and not just respect it, but embrace it. And
though it is not easy to roll against the tide, I feel much
more grounded and content than many people I meet.
Educating the broader public about your disability and
how to help accomodate
That brings me to my last point – that having
good work-life balance necessary to manage invisible
disabilities, and knowing how to *gasp* ask for help,
makes us superheroes of a different kind. Those of us
struggling with invisible disabilities (really any kind of
disability) can do a lot to promote dialogue about what
it means to be healthy. Whether we have epilepsy,
MS, mental disorders, a learning disability, we all have
something valuable to teach in a world that is becoming
increasingly fixated on “how much a person is worth.” We
have innate value in understanding ourselves, our minds,
our bodies, and can teach others how to respect not just
us, but themselves as well. But it takes courage. For me,
it means no work email after hours, not being able to be
as social after work as I would like, getting a solid 8 hours
of sleep, eating well and giving myself plenty of down
time to decompress. Not courageous in a big way, but
I’d like to think in my own way I’m helping to change the
conversation
In truth, being invisible isn’t really all it’s cracked up to be,
and to that end, I am not afraid to stand up for myself and
what I believe. There are many options out there, but you
have to be willing to be patient with yourself and others,
understand the law and what it does, or does not cover,
as well as being willing to be courageous and stand up for
what you believe. And part of me telling my story, I hope,
helps others to feel comfortable telling theirs.
Beth is presently a Career Advisor at Georgetown University. She was diagnosed with epilepsy in 2008, and
has spent much time counteracting today’s workaholic
culture to be better accommodating to people with
disabilities. Find her @beth_schill.