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?
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.