Baby Jude’s first Summit DD Calico classroom teacher is named Lucy. She is hands down a perfect fit for her job as the teacher in the baby room.
Lucy made our transition into an integrated classroom an easy one. She coaxed Baby Jude out of his shell and welcomed me as a nervous, “Oh crap, my kid is not one of the typical babies in this classroom, he is one of the disabled babies” mom with open arms.
I don’t mean that as a judgmental “Oh crap,” but rather a realistic, honest one. And I’d bet my bottom dollar that if you had to have a team meeting for your barely 1-year-old, newly-diagnosed baby to start a day program chock full of therapies and measurable goals, you’d have a flash of “Oh crap,” too.
Teacher Lucy is great. So when she asked me and another Calico mom to speak at her church as part of a disability awareness initiative, I jumped at the chance to repay her.
The talk was supposed to focus on how their church family can be more accessible and supportive of families who live in the disability world, from a parent’s perspective. How can they help and support those families? I knew exactly what I wanted to say and what I hoped they would hear and take to heart.
Here are my “10 Commandments” for compassionate disability awareness.
1. Don’t assume that because a disability or challenge is not obvious to you or to the naked eye that it does not exist. Look to the person at the end of your pew, to the person a few choir positions down or to the family parked next to you in the church lot, they may be silently suffering from depression, multiple sclerosis, cancer, cerebral palsy or fibromyalgia. Disabilities do not require wheelchairs, braces, limps, service dogs or seizures. You just never know what the person next to you is living with.
2. Assume that any and every person you know is living with a challenge or disability – whether their own or as a caregiver – and could use a hand from time to time – be it a bite to eat, an ear for listening, an offer to babysit their other children, or a hug when they appear frazzled.
3. Don’t stare. Teach your kids not to stare at equipment or at loud, non-pleasing sounds. The person using a ventilator attached to their power chair may not even realize you are staring. But his parent, caregiver or accompanying friend does.
4. Teach your children to ask you questions if they have them. What is that big tube in her neck? Why does that baby have a bottle hanging above his belly and his Mommy calls it his lunch? Can I pet that doggie in the restaurant?
Do your best to answer honestly. Your sense of calm and educated compassion will translate to your questioning child. It will go miles.
5. Don’t assume that a person with obvious disabilities is less intelligent than you, cannot hear your mutterings and cannot see a look of pity on your face. Human intelligence and intuition are blessings from God and people with disabilities seem to have them in spades. Be careful – even when you may not be able to understand them, they are on to you!
6. Get involved. As a church community, you could support the Summit DD, you could volunteer for an autism or MS walk. You could reach out to United Disability Services, Evant or SandRun Supports and “adopt” a group home. You could collect money for the Akron Children’s Hospital Radiothon or collect pantry items for the local Ronald McDonald House. There are people with disabilities and challenges everywhere, even in your own neighborhood. They need folks to get involved and support them.
7. Don’t assume that a person or family who lives with a challenge or disability only wants to talk about said disability. The lady two pews behind you? Her husband uses a walker and bedside commode due to MS, but she still enjoys growing her garden. Chat about her beefsteak tomatoes and cucumbers.
The car parked next to yours in the church lot with the handicapped parking pass? His wife has Parkinson’s and shakes so much that he holds her tea cup for her to sip every morning. He enjoys basketball. Recap the NBA playoffs with him.
The ragged, tired mom whose adorable toddler clunks his bright red gait trainer down the aisle while accompanying her to communion, she missed the season finale of “Grey’s Anatomy.” Fill her in.
Trust me, when you love and live with a person with a disability, you think about it enough. You discuss it with doctors and treatment team members often. To talk about something else, anything else, is a breath of fresh air.
8. Be accessible to people with disabilities. This includes the obvious things like ADA compliance in buildings, churches and store fronts to having a sign interpreter at church-sponsored events. Give a warm, welcome smile to every face that walks, shuffles, is carried, wheels, or limps through your church doors. Your accessibility is critical.
9. Don’t assume all cultures, people and demographics feel the same way as you. Disabling conditions are digested differently by different people and by different cultures. Some folks may be open and accepting. Some folks may feel shame and regret. The latter may not be what you or I consider to be a Christ-like response, but neither is judging that reaction. Keep an open mind.
10. Do remember this. Take it into your heart and hold it tight. If you and I are lucky enough to live long enough, we will all be disabled one day.
Disabled is nothing more than lacking the ability to do one thing or another. Live long enough and your eyes will lose focus, your hearing will fade, your muscles will weaken, your memory will skip a beat. But, if you have, as a church community, done as you intended and raised your communal disability awareness, if you have looked around at your congregation and embraced one another, if you have learned from families’ challenges, if you have supported community awareness and causes, if you have raised compassionate, questioning children, then even with blurred vision, deafened ears, tired muscles and foggy memories, you will be OK. Because you will be loved, supported and cherished by your church family.
As it turns out, I could not return all of the favors teacher Lucy had done for me and Baby Jude. As bad timing would have it, life happened and I was not able to personally deliver my talk.
But teacher Lucy covered for me and read my “10 Commandments.” She assures me that my words were well received by the congregation and it had a positive impact on folks. That is nice to hear.
Grateful, Prayerful & Hopeful.
Read more about Baby Jude in the rest of Sarah’s blog posts.