In December we were invited to
an Christmas event. I was overly excited. I planned cute formal
outfits for both boys. I anticipated and was dreaming about the
expressions on their faces; joy, happiness and the awe
of childhood Christmas all wrapped up as if it were a perfect gift with
a sweet little bow. The morning of the event however we were notified
that the event center was no longer going to allow families with
children in wheelchairs to sit all together. We'd
have to be split up. Noah would only be allowed one caregiver to sit
with him in ADA seating - the rest of his family and respite attendant
would have to be seated elsewhere. I was really in shock that an event
center could think that was acceptable. Typical
families are not divided and all sit together. Why not families who
have a child in a wheelchair? A family is a family.
We inevitably wound up having
to decline the invitation as much as it hurt for me to do that. Noah is
a all hands on deck kind of kid and more hands the better when it comes
to an unexpected crisis or sensory processing
episode. Splitting up isn't an option for us. Not to mention I would
never be able to see the joy in Noah's face or hear the laughter in his
voice, or his expressions or be present in that moment with him. I
would be cheated out of all of that leaving
him behind to sit with only his dad while I am divided from them, not
to mention risking his safety if only one person was with him. I
marinated in sadness and regret and the realization that this world
wants to make very little efforts in including us in the ways we need to
be included.
Today is the International Day of Acceptance (January 20th). The goal
to embrace diversity, educate your community, and empower each
other. It's so hard to embrace diversity. It's an uphill battle every
single day. Being different isn't good. Being different gets you
separated as a family. Educating your community?
Doubtful. In the minds of others they think they are doing an
excellent job of being mindful of ADA rights, and they pat themselves on
the back for supporting certain members of the community - perhaps
those with disabilities and illnesses that don't require
the use of a wheelchair - yet we're still not all on equal footing.
Certain conditions or diagnoses are more favored in the community than
others.
In a world that penalizes you if you have a child in a wheelchair - a
community that makes you feel "less than."
I thought perhaps this
was a fluke. That perhaps one venue had incredibly unfair rules and
expectations for wheelchair families. But that appears not to be the
case. Families report to me that this is happening
universally with movie theaters, sporting events, concert venues, and
performing arts. That across the board event centers are hiding behind
this excuse they don't have enough wheelchair seating to allow families
to sit together - when really it should be
like any other event. When seating is sold out it's sold out, rather
than making the policy to split up families. Division is not
Acceptance.
Acceptance is the
recognition that families are deserving of staying and being together
just like typical families. Making a policy that prohibits an entire
family from sitting together is unconscionable. So, today on the Day of
International Acceptance ask yourself this question: What are you
really doing to make sure that you are fully accepting and embracing the
disability community and their family as a whole?
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.