Let me get my disclaimers out of the way. I am not disabled. My husband, though, is a wheelchair-user. Tom is technically quadriplegic, but functionally paraplegic due to a fall when he was just 20. My experience of the marginalization of persons with disabilities is vicarious, but poignantly and painfully real.
Eighteen-and-a-half years ago, after a seemingly endless flight from Washington DC to Anchorage, I happened to overhear a man speaking on someone else’s voicemail. The voice I heard stopped me in my tracks. I half-swooned and declared à la Miss Scarlett (and in public) that I would “marry the man behind ‘that voice’ just to listen to him talk for the rest of my life.” A few minutes later I met the man with “the voice” and nine months later I married him. Tom and I will celebrate 18 years of marriage in July.
My second disclaimer: I love Tom to infinity and back. My husband is heroic. He has overcome death. He has overcome brokenness and immobility. He survived being ignored and warehoused, uncared for and abandoned by those who should have been his advocates. He has done more than most humans to come back from the edge.
My third disclaimer: Sometimes I get angry. Usually I remember to direct my feelings outward—to the culture and its inhabitants who hurt us. But my kindness does not exonerate your failure to comprehend. When you perpetuate ignorance about the issues addressed here, you are causing real pain—emotional and otherwise—to individuals you might care about or even love.
After I discovered that Tom used a wheelchair and after I was in love (which occurred virtually simultaneously), I realized how little I knew about living with a person who was mobility-impaired, much less about being one. By asking questions (and no, I’m never overly embarrassed by my own ignorance), by trial and error, by listening, watching, empathizing and thinking, while I still don’t consider myself an expert, I think I have learned a heck of a lot more about living with mobility impairment than the average person.
While I know less about other forms of disabilities, it’s not as if I can’t empathize. I’ve had bilateral eye surgery that left me with worse-than-blurry vision—and the inability to read—for two weeks. I’ve been part of an audience in which I was unable to hear anything that was pertinent to the situation. When all else fails, the very simple exercise of thinking about the various difficulties individuals tolerate on a day-to-day basis can reveal a lot. This article, I hope, will relieve you even of that small burden, but nevertheless teach you some things you should know.
A person with one disability doesn’t necessarily have another.
My husband cannot walk. He suffered a catastrophic 100-foot fall from a cliff into the shallows at a bend in the Chagrin River in the Cleveland Metroparks when he was barely 20. While the fall practically killed him (he was revived in the ER), it did not permanently affect his other abilities. He can hear. He can speak for himself. He can think better than most folks. Please don’t yell in his ear. He made our dinner reservations. He drove us here in a regular car (with hand controls). He announced our arrival to the maitre’d. There is no cause for you or anyone to address your questions to me rather than to him. There is even less reason for you to scream at Tom at the top of your lungs. If you want to know where he wants to sit, ask him.
A disabled person probably doesn’t need a boost and if they do, let them ask.
Disabled doesn’t equate to unable. To give a person who uses a wheelchair an unexpected push as she appears to struggle up a steep incline, or hesitates before entering the crosswalk, is as rude and unwelcome as pushing any other person unexpectedly in the back in the same circumstances. Your “target’s” balance may be hard won. Upsetting it can have disastrous consequences. If you see a person struggling and are moved to offer your assistance, by all means offer. But—in this circumstance at least—don’t “just do it.” It’s worse than impolite. It’s dangerous. And if your offer of assistance is rejected, please don’t take offense. Accept a courteous, “Thank you, no” with as much grace as you offered to help. We deal with accessibility issues every day. We have the process down. Your “help” may as easily upset the apple cart as provide real assistance. And believe me, if we really need help, we will readily ask.
On the other hand, like every other human being on earth—and perhaps more than the ordinary person in your everyday passing—we very well might need a smile, an offer unspoken but communicated by a raised eyebrow, a courteous “Good day.” Our days might be harder than yours. Parking, carpets, slogging through the snow, overheating, grocery shopping, visiting the doctor, and any other everyday activity likely costs us more than it would cost you. In fact, most “shoulds” and “oughts” we have long since thrown aside. But your encouragement (as opposed to your active assistance) and even your quiet acknowledgement of our small victories are never unwelcome.
Disabled doesn’t mean “bad.”
Although you may hesitate to believe it, many—if not most—people who haven’t lived with a disability or a disabled person seem to be of the mind that the person did something to deserve his fate. Don’t believe me? Believe this:
Aside from [blindness in old age], natural causes of disability are not mentioned in the Bible. Disability is attributed to God. The general view of the Old Testament writers is that God brings disability as punishment for transgressions for sin or as an expression of God’s wrath for people’s disobedience. It is seen as a curse and as a result of unbelief and ignorance (Jewish Encyclopaedia, 1920; The Talmud of Jerusalem, 1956; and Encyclopaedia Judaica, 1972).
—Pauline A. Otieno, “Biblical and Theological Perspectives on Disability: Implications on the Rights of Persons with Disability in Kenya,” 29 Disability Studies Quarterly 4 (2009).
Even Jesus, after healing the paralytic who lay by the pool at Bethesda, warned him: “See, you are well again. Stop sinning or something worse will happen to you” (Jn. 5:14). It’s like the kids in horror movies who only become victims after they’ve been naughty. Is it any wonder that educated, informed, sophisticated people still deliberately avoid personal encounters with disabled individuals?
But this article is to educate, inform, and offer your further sophistication. I promise you, my husband is not paralyzed because he’s a sinner. He is paralyzed because, in unfamiliar terrain on a dark and rainy night in 1981, he tripped.
Don’t raise your children to fear the disabled.
“Pshaw,” you say. “No one does that.” Really? Were your children born with an aversion to dark glasses and white-tipped canes? Are they fascinated by everything with wheels, from the fire truck to the grocery cart, but somehow inexplicably horrified by wheelchairs? What makes you take them by the hand and cross the street to avoid coming face-to-face with us? Disabilities aren’t contagious.
When my grandchildren were born, they were introduced to their Grampa just like they were introduced to everything and everyone else. Tom was as careful of fingers and toes as you would be pushing a baby in the stroller while a toddler walks alongside. They grew up curious, as children do, and asked—at various stages—could they ride? Why can’t you walk? How can you drive? Do you hurt? How can you get on an airplane?
All of the questions are good ones, and they all have answers that are easy—or at least possible—to explain. You have much to learn from your children. Let them ask their questions. Ask them yourself. And let my husband (or me) answer you. The answers can be fascinating and will help you get to know us and other disabled people.
Please don’t deliberately exclude us. And event planners: make sure you don’t unthinkingly exclude us!
We deal with Tom’s wheelchair and his inability to walk every day. Your daughter (whom we love) is getting married in an old barn or the British West Indies? You’re having a picnic at the beach? You’re having a housewarming in your lovingly restored (but inaccessible) Victorian? You’re having a holiday party? Please don’t leave us off the guest list because you can’t figure out how we’ll get into the venue.
Why are counter-height tables and chairs chic? And bars? Yes, I know they don’t call them “bar-height” for nothing, but people who use wheelchairs are of legal age and don’t mind enjoying a cool one with colleagues. Sadly, nearly every reception at every bar event (sorry for the bar/bar confusion) is a standing affair. A sitting person, including anyone who uses a wheelchair, is treated to the vision of a sea of butts. If you see a person in a wheelchair at a reception, sit down beside them. Get to know them. It will be worth your time.
More importantly, when you’re planning an event, remember that not everyone who wants to come can see, hear, or walk. Sure, you provide buses for people to get from venue to venue, but they’re inaccessible. And the place the buses (that you can’t board) drop you is on the opposite side of the venue—all the way around the block—from the accessible entrance. Are your written materials available in Braille or on audio? Do the speeches and presentations have sign language interpreters? And having venues that are beautiful and historic is cool, but if the building isn’t retrofitted, my husband cannot join me.
While you’re at it, check out the hotel(s) where the attendees are meant to stay. Hotels are required by law to have some accessible rooms, but they aren’t (for whatever reason) required to hold them for disabled persons. And are those rooms actually ADA compliant? Is the bathroom door wide enough, for example, to accommodate a wheelchair? My husband and I often find the rooms at ABA and state bar events quite lovely and commodious. But seldom is a shower chair available, for example, which makes it absolutely impossible for a wheelchair user to bathe properly. And why-oh-why are the towels in the sky? Every hotel bathroom on the planet seems to have the towel racks at a height designed for members of the NBA. I imagine plenty of short people who need a boost.
In sum, these are but a few of the things my husband and I want you to know about us. I’m probably too often heard to say that Tom is antisocial. That’s not really true. He’s anti-exclusion. And it can be really tiresome.
We’re lawyers, after all. We are members of the largest volunteer professional association on the planet. The least we can do is try to take the lead on honoring the spirit of the law of inclusion, and not only the letter. Before we are lawyers, though, we are humans. Why aren’t we trying our very best to be as welcoming and kind to each visitor as we can be? Shame on us.
About the Author
Kathleen Balthrop Havener is a commercial litigator at The Havener Law Firm LLC in Cleveland, Ohio. She is a member of the ABA Law Practice Division’s Diversity and Outreach Committee, vice-chair of the Individual Rights & Responsibilities Disability Rights Committee, and a member of the Center for Professional Responsibility’s Diversity Committee. She can be found on Twitter @kathleenhavener.