Tag Archives: Disability Awareness

WHEN PEOPLE SAY, “I DON’T SEE YOUR WHEELCHAIR” by Rev. Lisa Heffernan, M. Div., WTS 2013

This might surprise a lot of people, but it bothers me when someone says they don’t “see my wheelchair” or my disability. It’s taken me a number of years to figure out why this bothers me so much. Of course, I want people to recognize my humanity first, right? Of course, I want my friends and family to see me – the weird, “Lord of the Rings” loving, occasionally overly-emotional, funny, theology nerd they’ve known for 30 years — first, right? Right!

But here’s the thing: having been born with spina bifida and being a full-time wheelchair user has shaped me and who I am in the world. The fact that I have a disability is a part of my reality I want others to see! That’s because, along with the wheelchair, they will see a young woman whose father’s death due to complications of multiple sclerosis has driven her to continue his work of advocating for people with disabilities. They will see a sister and daughter who would not have completed college or seminary without the encouragement, pushing, and support of her mother and brother. They will see a disability theologian and pastor who would not have been open to the work of the Holy Spirit in her life without friends who said, “You’ll become a pastor. Just wait.” or “The Church needs to hear your voice.”

In the end, “the thing” is that I would not be the person I am without my disability. Sure, I have bad or “down” days (sometimes weeks) because of the physical and relational struggles that have come along with it. It would be foolish or dishonest to say that I don’t sometimes wish I hadn’t been born with spina bifida when I have one of those bad days. As I get older and have begun to own who I am and all I’ve been through, though, those days don’t come as often as they did when I was a child. Today’s struggles are like those of a lot of women who are my age: trying to discern what comes next in my early 30’s as I look ahead to my future in ministry and academia, and figuring out where future relationships and family fit into that. I just get to navigate those things sitting down, rather than standing up!

As I navigate this life from my wheelchair, my hope and prayer is that the “-abled” world around me can understand this: When you tell me (and perhaps others like me) that you don’t see my disability, we may hear it in a way other than you intend. For my part, I hear you saying: “Having a disability is bad, and something to be pitied or unwanted. You’re more than this negative thing in your life.” The message that comes across is that others believe I hate my disability, so I must want it to be forgotten about so I can be viewed as a whole person by others.

Newsflash: I am a whole person. All persons with disabilities are “whole.” Our realities don’t match up with a world that looks to ridiculous standards of beauty, wealth, and physical and mental perfection in order to be seen as a whole person — as fully human. And you know what? That’s OK! People with disabilities have the same range of emotions, desires, and aspirations as those without disabilities. The problem is that attitudes and structures exist which limit how we can participate in the world. That is maddening and heartbreaking for me, not just because of my own life experiences, but because I know so many people with disabilities who could live into the fullness of who I believe God created them to be if the “-abled” world would open up even just a little bit more.

Great strides have been made with that since the ADA was passed, but we are still far, far from true equality and inclusion in this world. I don’t know how to fix it or make it better, but I feel called to help do that someday. I’ve made a start or two to “get my wheel in the door,” so to speak, but I’ve got a long way to go. So, when you see me or someone like me, please don’t assume I need you to validate my humanity by downplaying my disability. Nor do I need you to start believing the negative stereotypes that make people with disabilities seem helpless. Just get to know me — spina bifida, wheelchair, nerdiness, and all — and see that my life is not to be pitied – or something “inspiring” either! It’s just my life, one I want to live as freely and interdependently as I can. It hasn’t all been bad so far, and it wouldn’t be what it has been or will be down the road, if it weren’t for this speedster that helps me down that road — my wheelchair.

First published at: https://themighty.com/2017/04/my-disability-is-part-of-who-i-am/

Rev. Lisa Heffernan is pastor at Trinity Lutheran Church, Chamberlain, SD.
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AN INCLUSIVE LANGUAGE CONVOCATION TALK by Nicholas Rohde, MDiv Student

I am not disabled.  Let me say that again: I am not disabled.  I am not handicapped.  I am not crippled.  I am certainly not handicapable, whatever that means.  I am not a “gimp.” I am not a disabled person.  I am a person with a disability.  Person first, then disability.  Or maybe more accurately, person first, then my hair color, eye color, height, and about 20 other things that also don’t matter, then the fact that I am physically disabled (by definition).

Author Amos Yong writes about people with disabilities in relationship to the body of Christ.  Yong makes the argument that people with disabilities are equally made in the image of Christ, just as able-bodied persons, and are not people to be viewed as needing to be fixed, healed, or cured.

So, how can we be inclusive as fellow members of the body of Christ?  Personally, I think language, specifically body language, is the biggest and most powerful way to be inclusive of others.  Now, I’m not about to just give out a laundry list of Do’s and Don’ts because that doesn’t exist.  Literally every person is different.  Each person’s preferences are unique to them. Saying or doing one thing to another may offend one person, be appreciated by other, and have absolutely no effect on a third.

However, what I will tell you is to think.  Especially when planning something like worship, think about it.  Think about the physical space.  Can people with varying physical disabilities participate in worship with the way that the space is arranged? (For example Dr Nessan and I don’t use the same pulpit or podium because of our foot and a half height difference).   Are there ways for each worshipper to participate physically in the worship service, i.e. the standing, kneeling, and coming to the front for communion, being at the font?  And do those options make individuals feel a part of the assembly, or singled-out?

Listen to how people talk about themselves, and do your best to also speak about them or to them in the same manner.  ASK QUESTIONS!!! Don’t just assume things.  Yes, yes you will get things wrong from time to time.  Yes, you may annoy someone with the questions you ask, but if you treat them as a another member of the body of Christ, made in the image of God, it is better than assuming things about them as if they couldn’t decide for themselves.

Lastly, in all things, let there be forgiveness.  Being mindful and inclusive of one another is not a perfect science and therefore, we don’t always get it right.  There are times when we forget things, say the wrong thing, something slips our mind and we act incorrectly.  IT’S OK!!  Forgive one another and live life together as fellow members of the body of Christ.

2010 ADA Guidance Standards for Accessible Design

INTERVIEW WITH NICHOLAS ROHDE By Michelle Kanzaki, Final Year MDiv

People are viewed in so many different ways in today’s world. Every Christian is called to reveal Christ’s love in how they see people in this world. I am focusing on inclusion for people who live with disabilities.  We automatically know that someone who wears glasses, a hearing aid, uses a cane, crutches, or wheelchair requires some consideration. But there are also invisible disabilities such as a heart condition, cancer, colitis and migraines. Yet, none of these conditions make a difference in who the person is on the inside.

My disability happens to be a Muscle Disease called Myasthenia Gravis. I try not to let it slow me down, but for me to play basketball, run a race, or even jog is an impossible challenge. During class, sometimes my eyes will cross and it will be difficult to see even with my glasses. If I am writing or typing for an extended period of time my hand will lose it’s grip or my fingers will stiffen leaving me unable to continue. Having fallen down a flight of fifteen stairs to a cement floor more than once, I avoid stairs at all costs. So today, I will clarify some important ways you can view me and another Wartburg student, Nicholas Rohde a little more inclusively.

Michelle: What brought you to Wartburg?

Nicholas:  “Here is the first place where I have lived where my disability is not a significant portion of who I am…yes it is still part of me, but I am accepted for who I am and not for who I appear to be. People at Wartburg see the essence of who I am. I’m 99% sure that they describe me as Nikolas Rohde, MDiv First year student from Rochester, Minnesota. My disability would not be a necessary part in their description of me. It would be more like an afterthought or at the most one of the last things people here would say about me. I like that the people of Wartburg talk about my personality and how they see me as a whole person.”

Nicholas went on to say that the most important thing is the way you respect him. “Treat me the same way you would treat anyone else. Don’t placate me. Be authentic and genuine with me. I can tell the difference. Be natural, it’s ok if you do something for me, like open a door if you have a free hand and I will help you when I can. Sometimes people on campus will forget that I have a disability and it becomes invisible to them. Then they say something or ask me to do something and all of the sudden they are embarrassed because they forgot.

Michelle: So do you appreciate it when people forget that you have a disability?

Nicholas: “It is not a simple yes or no answer. I want people to forget about my disability, but the reality is that it is still there and I still need help at times. I might require something different from 99% of the people in the room but, in that moment, do what is necessary to assist me as you would any other human being. Don’t make a big deal of it, just do it. In all the other moments when my disability doesn’t matter, then IT DOESN’T MATTER!”

Michelle: Is it all right with you if someone asks questions about how to be authentic and respectful of you?

Nicholas: “Yes, if you don’t know then ask, otherwise, if you assume the wrong thing you may appear to be disrespectful. This does not mean that you need to ask me about every little thing that comes up, but be authentic. If I don’t like what you are asking or implying by the question, trust me you will know. (He says with a wry smile.)

Michelle: How do you feel about people asking you about your disability?

Nicholas: I don’t have a problem with people asking about my disability, but I do struggle when a child might ask their parent about my disability and their response is shhhhhbe quiet, that’s not nice. This reaction makes the subject of disability a taboo. It’s interesting, I have two nephews who just know me as Uncle Nicholas. They are really young but they haven’t seemed to notice that I am different from them. So I wonder when they will realize our differences are more significant than my being just Uncle Nicholas. I wonder if it will change our relationship in any way.

Michelle: What else would you like people who read this know about you and other people with disabilities?

Nicholas: First, let me give you my disclaimer. (Perhaps this should have gone at the beginning of this interview) How people treat me is how I want to be included. I cannot speak for every person with a disability, I am just one of many. People have their own ways of viewing what is inclusive and respectful. Now on to my answer to your question. It is important for people to know that a person with a disability is not just taker but is also a giver. I believe all of us have needs. Some needs are physical, some emotional, some are mental, whatever. A relationship is something in which two people give and receive from one another, whatever it might be. In what I consider a friendship there is no I.O.U. involved! It is not a relationship where it is assumed that you do something for me. PERIOD. I do something for you. PERIOD. Friendship, relationship is built on mutual respect and trust and that is what I want in a relationship/friendship. Maybe just in an acquaintance/passerby that is not even a relationship. I just want to be seen as who I am Nicholas Rohde. Jesus sacrificed everything for us. Period. If there is a because, it is because of the wanting for a relationship, which all humans have and this could be the same thing, but a different word because of love.

Michelle: Thank you so much for your time Nicholas. I am looking forward to many more conversations with you.

For further information on how to include people with disabilities into your life check out these websites. http://www.tolerance.org/article/disability-awareness-were-it-together or http://www.uni.edu/equity/disability-etiquette.