As I face my seventh Christmas with quadriplegia, I’m saddened as always that the holidays just aren’t the same. It’s not my disability that makes them any different, just the ways society excludes me with this power chair on my butt and no money in the bank.
I often say this is a bipedal world and I’m just rolling in it. Physical inaccessibility is no joke, though. There’s a tangible barricade between my physical body and the places it wants to be, like home for the holidays. The barricade consists of a series of stairs to get into my daughter’s home, a modification we just can’t afford. The barricade also consists of eighteen inches of space prohibiting my wheelchair from entering my van; accessible transit doesn’t exist to get me home, and my van’s chair lift has been broken for two years. Modifying a vehicle for accessibility can be upwards of $40,000. My van was donated, and the lift repairs will cost me at least $3,000.
Home modifications are really expensive, too. Just to get inside, an accessible ramp can run up to $10,000. There are very few state or federal programs offering home modifications for people with disabilities. Affordable, accessible housing is incredibly rare to find too. Many people with disabilities stay on waiting lists for years. A lot of us have no choice but to move into skilled nursing facilities and assisted living facilities.
Not home for the holidays
The holidays in an institution are like you probably imagine them: not particularly festive. These institutions are mostly for-profit, and quality of life for the residents isn’t really prioritized in many institutions.
For example, I lived in one facility that did nothing beyond order from a deli and stick a mechanical plastic tree in a corner for Christmas.
Some facilities can be incredible, though. I lived in another assisted living home in which they organized festivities, included families, and made every resident feel special and at home. It’s just hit-and-miss with these institutions. They’re not sufficiently regulated so problems like understaffing and compromising on care are the status quo.
Staying out of institutions is a constant struggle for people with high levels of disability. Getting the care we need in our communities isn’t easy. Direct care workers aren’t paid much and don’t want to work. Medicaid pays for some hours if we can prove how great our need is, but they don’t offer much (hours or hourly compensation to workers).
During the holidays, direct care workers want to be with their families celebrating like anyone else. But our needs as people with disabilities don’t disappear when the help does. We can’t demand our caregiver show up on Christmas morning, but without them, how would a quadriplegic like myself even get out of bed?
I found myself without a caregiver one Christmas. It was the worst Christmas of my life. There was no transportation to festivities anyway, so I sent my daughter without me. I got my begrudging brother to get me up so I could sit by the tree. There was no money for gifts. Between not having a caregiver, not having accessible transportation, and not having an accessible entrance to my family’s house, I missed out on so much.
Make your holidays more accessible
If you have a loved one with a disability, here’s some tips to include them over the holidays:
- Take them some goodies, because we might not be able to cook, or afford to bake. Offer to decorate for us, if we can’t get up on a ladder. Wrap our presents, if we can’t use our hands. Make it a fun and festive time with carols and cocoa!
- Try to arrange transportation to festivities. Are there any accessible vans to rent or cabs for hire? Could you borrow an accessible vehicle?
- Pick an accessible setting for family gatherings. Sure, you always do Christmas Eve at Grandma Anne’s. But if everyone goes to Aunt Linda’s, cousin Jenna with the wheelchair can come, too. Or maybe family/friends can combine resources and skills to modify Grandma Anne’s place for accessibility!
- Do a family Secret Santa instead of expecting everyone to purchase for everyone. Or organize a craft night with your disabled loved one so they can make special DIY gifts to give out.
- Visit your loved ones in facilities. Decorate their room. Get them out if you can. Gather around the community Christmas tree like it’s your own and enjoy family time.
- Offer care. “Hey, did you need help getting up and ready for the festivities today?” We don’t want to ask. We know everyone is busy. But include us. Please include us.
It means a lot to a lot of people
In the United States, 1 in 4 adults has a disability, according to the Centers for Disease Control and Prevention. Mobility disabilities are the most common kind, impacting 1 in 7 adults. Issues like affordable accessible transportation and home modifications affect this huge demographic greatly.
People with disabilities and elderly people are the two demographics at risk for exploitation in the long-term care system. Roughly 70% of Americans will eventually find themselves in the long-term care system of insufficient homecare and inadequate institutions.
It’s been three decades since the Americans with Disabilities Act passed and society is still overlooking individuals with disabilities. But we’re still here, and entitled to as quality a life and happy a holiday as anyone.
Cassandra Brandt is a single mom from rural Arizona. A former traveling tradeswoman, she now lives with quadriplegia and writes and advocates full time.
Donations to GO Humanity’s Annual Appeal will fund programs prioritizing people with disabilities and other similarly vulnerable groups for aid with food relief, material relief, and disaster recovery.