Catherine’s best friend, Elizabeth, uses crutches and braces to walk. Sometimes she uses a wheelchair. If you look closely at the illustrations in the book, you’ll see that she’s not the only person in the parish with a visible disability.
You rarely see disabled characters in children’s books, and that’s a problem. And you rarely see people with disabilities in Orthodox churches, and that’s a bigger problem. Many of our churches have architectural barriers that prevent people who use wheelchairs from attending. But physical barriers are easily dealt with. It just takes time and money.
The more difficult barriers are the barriers caused by other people’s attitudes and expectations. These barriers of the heart can be overcome, too.
What do we mean by disability?
It might seem obvious: a disability is a condition that makes it difficult to see, hear, move, or take care of yourself. It’s not just about wheelchairs. There are many conditions that can result in disability, and many different ways they can affect a person.
- Some conditions, like the loss of a leg in an automobile accident, don’t change much over time. Some, like multiple sclerosis, get worse over time.
- Some conditions, like migraine disorder or Meniere’s disease, have symptoms that vary from day to day. Someone with these conditions may seem to be just fine one day, and not at all fine another day.
- Some conditions are invisible to other people. You can’t tell by looking that someone has autism or Ehlers Danlos syndrome. You can’t see PTSD or fibromyalgia or celiac disease.
Disabilities don’t always look the same
Most impairments are not all-or-nothing. For example, someone who is blind may have what’s called tunnel vision. They can see clearly straight ahead in a small area. They can look you in the eye and read regular print. But they have limited or no peripheral vision and so use a white cane or a guide dog to walk safely. Others may have poor central vision, so they can’t see faces clearly or read print. But they have typical peripheral vision and can walk about easily with no aids. Yet others may only see light and shadow, see only on one side, or have spotty “blind patches” in their visual field.
The same condition can be more or less disabling depending on the circumstances. For example, suppose your knee was injured in a way that makes it difficult or impossible to climb stairs. That condition is a serious disability if you live and work in multistory buildings that don’t have elevators. If you live in a single-story house, though, and don’t encounter stairs in your everyday life, it might not be much of a disability at all.
What people with disabilities would like to tell you
I asked people with disabilities what they would like to say to their church, if they could say just one thing.
Chat with them at coffee hour
One woman said, “Disability is lonely and isolating. Love us enough to sit and talk with us at coffee hour, for crying out loud. That is a very low bar. So low.” Another said, “I’m not contagious.”
So when you go to coffee hour, grab a cup of coffee and look around for the person who has a disability or a chronic illness. Smile. Say hello. Chat with them for a while. Unless you already know them well, it’s safe to assume that they’d rather talk about something other than their condition. If you’re not sure what to talk about, try talking about the homily, the saint of the day, or the weather. Pretty much the same things you’d talk about with anyone else.
- If the person is using a wheelchair, sit down so that you’re at their eye level. If you’re standing, don’t lean down as you would to a child. Instead, back up until you and they can look at each other comfortably.
- If the person is blind or has low vision, identify yourself and anyone who is with you. Let them know when you move, or when someone else joins you. Tell them when you leave.
- If the person is deaf or hard of hearing, be sure you face them, and don’t shout. If the deaf person signs, and you can sign even a little, by all means, sign! If you don’t sign, ask if you should speak or write to them.
- If the person speaks slowly or with difficulty, be patient. Don’t pretend you understand what they’ve said if you don’t. Ask them to repeat what they said, or ask if they would write it down for you.
A deaf friend said, “Sometimes people treat me as if I’m stupid because I don’t respond quickly.” Autistic people often have the same complaint – other people won’t give them the time they need to process language and put their response into words. Give them time.
Topics to avoid
Don’t talk about how inspiring or brave or special a person with disabilities is. Don’t tell the parents of a child with disabilities that God gave them a special child because they’re such special parents. While you mean to be encouraging, many people don’t find it encouraging. Instead, they find it othering.
“And please, please don’t tell me how your sister in law, cousin, neighbor’s cousin had the same thing and was cured by such and such……or that you now sell some miracle product that absolutely cures/improves what I have.” The person with a disability or chronic illness is the expert in their own condition. Talking as if you know more than they do about their condition or how to treat it is insulting.
Offer help with respect
When a person with a chronic illness makes the effort to be at church, showing up and being present may be the absolute limit of what they can do. As one woman explained, “I am trying really hard to look like I’m OK and do some normal things. My only choices right now are doing things while I’m exhausted and knowing it’s going to take a toll, or doing nothing ever. So if I actually ask for help, I really really really for real need help, even though you think I look fine.”
On the other hand, don’t assume that a disabled person needs help if they haven’t asked for it. Disabled people know their own abilities and their own needs. You can offer to help, but don’t insist on helping and don’t feel offended if your offer is declined. The help you offered might not be needed, or it might be unhelpful. As one friend said, “disabled folks may look like they’re struggling when they’re really just doing things their own way.”
Honor their assistive devices
A person with a disability might use a wheelchair some of the time but not all of the time. That doesn’t mean they’re making a big deal out of their disability, or faking it. It means that they need different things at different times. “I want to be believed when I say I can’t do something, even if I could do it yesterday.”
Be respectful of their assistive devices. Don’t lean on their wheelchair; don’t move their crutches or cane without asking. And one grandmother asks that you make sure your children don’t treat her cane as a toy. “It’s not cute when someone’s kid takes off with my cane and then pitches a fit when I need it back.”
Trust them to know what they need
Don’t assume that you know what a disabled person needs. “People with disabilities are experts on their own access needs,” said one person. “Not a doctor. Not the priest.” A disabled person may need to sit when everyone else stands, or remain standing when others sit. They may not be able to make a prostration. They may need to drink water during the Liturgy. They may need to wear dark glasses indoors. They may need to bring their own food to coffee hour. They may not tolerate loud noises. They may ask you not to touch them.
It doesn’t matter whether they’re a child or an adult. It doesn’t matter whether they look disabled or not. They don’t do these things to attract attention. They’re not being disrespectful. These are things that their condition requires.
By accepting people without judgment, and encouraging others to do the same, you’ll be creating a parish where disabled people feel welcome.
How to be a blessing
The people with disabilities who attend our parishes want to be treated with courtesy and respect, just like anyone else. But courtesy and respect are the minimum that we should offer. To go beyond that, think about how you might be a blessing.
It’s better to offer specific help than to say, “Let me know if there’s anything I can do.” As one woman said, “We don’t always feel comfortable asking for help, but if someone comes and offers to mow my lawn, I’m for sure going to accept the offer!”
But you don’t have to offer anything that grand to be a blessing: “When there are services where attendees take things home (e.g. flowers from the Dormition of the Theotokos, holy water, palms, icon cards) it would mean the world to me if you saved some for me. I have so many times when I’m looking forward to a yearly commemoration only to have to spend it at home or in the hospital, away from my Church. When people do this for me, it allows me to feel like my presence is valued and I was able to share some of the blessings even though I couldn’t be there that day.”
When a disabled person is away from church, consider calling them or texting them or sending them a card. Let them know you missed them. When they’re at church, let them know you’re glad to see them.
If other people complain that it’s too difficult or too expensive to accommodate disabilities (and, sadly, that sometimes happens), speak up. Make sure it’s clear to others that people with disabilities and chronic illnesses are welcome at your parish.
Special Needs Resources from Summer Kinard: Summer Kinard provides free downloadable visual liturgies and other resources to help children and adults with special needs participate in church.
Arms Open Wide: This blog provides a wide range of disability resources, with an emphasis on the Orthodox Church.
The Spoon Theory: An analogy used by many people with chronic illness to explain their disability.
How Not to Say the Wrong Thing: The rule of thumb is, “comfort in, dump out.”
What should I do if I meet a service dog team: Basic courtesy for interacting with people who have service dogs.
Church and the Child with Invisible Disabilities: A discussion of Orthodox faith and Orthodox practice as it relates to children with invisible disabilities such as mood disorders or autism, with links for further reading.
Prayer for Literal Thinkers: How to teach an autistic child what prayer is.
Schneider Family Book Awards: These awards are a good place to look for children’s books that include disabled characters.
Loving an Autistic Child at Church: How do you respond to an autistic child at church? With love.
Love and Food Allergies at Church: Tips for loving and welcoming people with dietary restrictions to your church.
Pascha Parenting Tips: Ideas to make Pascha manageable if your family includes young children or children (or adults) with special needs.