Arc and Why Do Strangers Assume My Girlfriend Is My Nurse

Nice Op Ed from Shane Burcaw in today’s Chicago Tribune.

Tony

By Shane Burcaw

I recently was out on a dinner date with my lovely girlfriend, Anna, when a stranger
approached to have a friendly conversation. He turned to my girlfriend and asked, “Are you
his sister?”

There is nothing inherently wrong with his question, but if I saw two young people having a
nice meal together, I would probably assume they were dating. This does not seem to be the
assumption people make when you throw a wheelchair into the picture.

On various other occasions, my girlfriend has been asked if she was my nurse. Once, a
person asked if she was “the one who takes care of him.” We’ve gotten used to this bizarre,
recurring question, and often find ways to poke fun at the ignorance of strangers.

“He’s my dad,” Anna will sometimes answer with deadpan perfection.   “I just pay her to be
my friend,” I will often reply.

The mindset that causes a stranger to automatically assume that any female in my presence
is a nurse, or family member, ignores the reality that people with disabilities can and do have
“normal” romantic relationships. I place normal in quotations because I’m not sure if there is
such a thing when it comes to love.

For a good chunk of my young life (I’m 22 and I have a disease called spinal muscular atrophy,
similar to Lou Gehrig’s disease), I didn’t think I was worthy of that type of affection. I worried
that my physical limitations would prevent girls from wanting to date me. I will not be able to
pick her up in my car, I can’t give hugs or hold hands very well, and we will be limited in the
activities we can do for dates. It all seemed rather hopeless in the heart-wrenching, hormone-
fueled days of middle school.

I worried even more that a girl would date me out of pity, silently putting up with the
annoyances of my disease because she felt bad for me.

Then college came and my brain opened up to the real truth. I met some spectacular people
who helped me shake the notion that love was only for the physically abled.

Sure, I can’t hold Anna’s hand in the traditional sense, but we make it work. To be fair, our
fingers look like a catastrophic train wreck once they are intertwined in the precise position
that I can manage. I can’t pick her up in my car, but so what? She enjoys driving and so we
make it work. And, no, I can’t go mountain climbing with her, but I can make her laugh. So
we find other activities. We make it work. I’ll leave the most intimate details for my books.

Once I realized that there are girls out there who are more than happy to “make it work,” the
fear of being unloved for all eternity drifted away like a funny joke of the past.

Today, I live with the firm belief that a relationship between an able and disabled couple can be
even more satisfying than your average romance. I’m still young and sometimes stupid, so I
don’t want to trick you into thinking I have this all figured out. But I believe the deeper closeness
in an able/disabled relationship blossoms from the process of teaching your partner how to
“care” for you. That’s a tough concept to grasp, so I’ll try to provide an example.

The first day that Anna and I spent together, we decided to go out for brunch. This outing
required Anna to learn “Shane Helper Lessons,” such as putting on my jacket, driving my van,
picking up my head when I lost my balance, cutting my food and helping me take sips of my
drink.

At this point in our relationship, I hardly knew Anna and was afraid all of this “helping stuff”
would overwhelm her. I must have expressed this because I vividly remember a conversation
where she said she was excited by the prospect of learning how to help me.

There is something profoundly intimate about a statement like that. On my end, I felt a deep
sense of serenity that could only be attributed to trusting her with my care. On her end, and
I’ve checked with her, there was an important emotional connection that began to develop
when she chose to be with me despite the extra requirements of stepping in to do such things
as cut my meatloaf.

In fact, one of our main sources of bonding was teaching her how to keep me alive — like how
to brush my teeth without choking me, how to put my shoes on correctly or how to shave my
face without slicing my jugular.   We never think twice about the fact that our relationship is
abnormal in any way.   We simply make it work.

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)
Tony@thearcofil.org