At the 2004 SLC Sunstone Symposium, there was a session sponsored by Dialogue titled 'Persons with Disabilities and the Church.' On this panel sat several people whose lives were affected by a family member with a disability. However, there were no ?¢Ç¨Àúpersons with disabilities' included in the panel.
As a person with a disability I was somewhat offended by this. I wondered why the experts on ?¢Ç¨Àúpersons with disabilities' were the family members and not the persons themselves. I felt as though the silence of personal experience was emblematic of the way many church members view disability.
In many cases, church speakers tell stories about persons with disabilities to inspire, increase pathos, and catch their listeners' attention. Like the story of Mary Goble Pay and other pioneers who lost appendages to frostbite, speakers use these tales of suffering to illustrate their sermons about endurance and faith. However, I believe that these stories create a narrative about disability that is demeaning, even silencing, to people with disabilities.
As a Mormon with a disability, I have had many experiences that make me feel that other members don't view me as a whole person. They see my physical difference and make immediate judgments about my ‘heroism’ and my ‘strong testimony’. People have told me that 'just looking at me' is inspiring. As if, by seeing my limp, the story of my suffering is self-evident to others around me. I reject the idea that people can know the story of my life or of my disability by reading my body or by watching me walk.
Because of the stereotypes among Mormons about people with disabilities, I am uncomfortable with way stories of disability are typically used in church talks and lessons. In addition, I hope that future Symposium sessions will address disability, and will purposefully include individuals with disabilities as authorities on this topic.
I agree that Church culture contributes to the process of ‘othering’ members with disabilities. It’s problematic when these stereotypes are perpetuated through the stories we tell.
When I think about why members share these stories, I find that the issue is a complex one. As harmful as putting people with physical and mental differences on pedestals may be, I think that it’s progress over how the same people were viewed in the not so distant past. Our society said very unkind things about these people and judged them harshly. Now we’re over-correcting, and cautious in how we talk about you and others. It’s like the uncomfortable phase you might go through when you’ve just reconciled from a nasty falling out with an extended family member.
I think that this is an issue that touches on all of us, as we all probably know people with disabilities. I think we should take a closer look at why we elevate people with disabilities in the Church, what the costs are, and what alternatives might be available to us. Any suggestions for us, Jana?
I am not at all surprised at what you say. I also have to say that as a convert I have found that this is the case not only with the Church – but with any religion (in my experience) that puts any emphasis on a “personal relationship” type of religious experience. I am treated as heroic – not as an individual with the same issues of belief that any member tends to have, It is as if – by being “handicapped” I am also incredibly spiritually gifted and all of a sudden – have perfect faith. My needs as a regular occasionally frustrated member are pushed to the side – as they obviously do not exist 😉 because I have the heroic gift of suffering going for me. Guess what folks – I don’t!!! For me – if I were to introduce myself to you – it would never occur to me to even mention that I have multiple sclerosis. My physical issues aren’t who I am – I am who I am. Does the general population go around saying – “Hi! I’m Mary Jones, I have red hair, a crooked big toe, and a family history of heart disease.” No – they don’t view themselves as a crooked big toe with a history of heart disease any more than I view myself as a multiple scerosis with difficulty with mobility and holding things without a major tremor.
I have found in going to different churches that are less personal in their approach to belief and the individual that I am treated as if I am not all there – almost as if – by speaking slowly and patronizingly to me I will better understand what is being said to me.
Perhaps this is because my handicap is from an illness and not an injury so I wonder if I am a symbol of their fears of what might happen to them – so if they treat me as a non-person or as a holy person it removes it from the realm of possibility for them?
Meg and John:
First of all, thank you for your comments. Let me reply…
Meg: Your comment illustrates so nicely what I was trying to say in my post–that Mormons with disabilities are treated as heroes instead of people. I think it might be interesting to think about the difference between a chronic, perhaps debilitiating, illness rather than an injury. I’m going to think about that distinction some more. In my case, my disability was the result of an illness (cancer), but the cancer is gone and I’m left with the disability. I’m not sure most people know how I became disabled, they just know that I have a prosthesis, or I walk differently. Also, I am curious which churches you’ve attended where you felt the emphasis was less on the individual–can you give some examples? One thing I like about academia (I’m in a PhD program right now), is that I rarely feel any pity from colleagues. And I don’t ever feel as if I’m on a pedestal, either. My disability is treated rather matter-of-factly, if at all. Such a refreshing change from the way I feel treated in Mormon settings.
John: I think you’re right in pointing out that a pedestal might be a better place for someone with a disability than an institution (as was all-too-common just a generation ago). However, our church has a very long way to go before we fully accept disability. I think the biggest problem stems from a persistent belief that God has a purpose in making that person disabled, so we create a narrative to ‘explain’ disability in faith-promoting terms. Also, there is a common belief among Mormons that the reason for disabled people is so the ppl around them can learn more about charity from them. However, if someone w/a disability is reduced to being a ‘tool’ for other’s growth, then that person is no longer an individual, they are just a foil for the able-bodied people who ‘serve’ them.
In my short post I suggested that we need to change the types of stories we tell about people with disabilities. I still believe that this is the best first step. Because, if we stop using stories of disability as ‘tools’ in our talks, we will stop viewing people with disabilities that way in our congregations, too.
During my teenage years I had cystic acne. It was a really strange purgatory. I was both invisible, and striking. Because I was ugly. Man, was I ugly. I was a walking example of volcanic activity. My face was often compared to a certain flatbread-based Italian cuisine.
I saw this anti-steroids poster the other day that showed someone’s back all covered with boils. It said something like, “Steroids make you sexy.” And I thought, “Huh. That’s how I looked for a long time.”
In the context of this discussion, I think its interesting to see where I registered on the disability scale. In some ways, I think you could say I was disabled. I couldn’t interact socially since I was always putting people off their lunch. The opposite sex was repulsed by me, and I was constantly in pain from the King Kong zits that covered my body. However, no one ever put me up as an example of sainthood, or extolled my suffering as part of God’s plan or a prop to their faith.
I didn’t expect them to. It wasn’t until now that I ever considered my condition as a possible disability. It’s probably because everyone has a mild form of acne at one time in their lives, so maybe they figured I just didn’t wash my face or something. But I think a bigger element was that it’s very hard to draw your warm fuzzies from ugly people. I don’t think I’ve ever seen a movie starring a kid with cystic acne. I don’t think it will ever happen. People with skin problems star in horror movies.
Angels never have acne.
Thank you for your comment. I feel you’ve made an important contribution to this discussion!
Perhaps I should have defined disability, but I purposefully left it broad in my post. But there certainly are grey areas–are obese people disabled? people with cystic acne? pregnant women? people with diabetes or asthma? Octogenarians?
Though I belive that disability as a category isn’t ‘real’–it’s just a social construction–I still use the term often because I think it’s productive to do so. When I use this term I suspect that it conjures up an image of someone in a wheelchair or with a mobility impairment. But all of us are ‘disabled’ in one sense or another–we wear glasses, we have high cholesterol, our knees ache when it rains, we have hearing loss on one ear, are infertile, etc. In some ways, I think the stigma and fear that surrounds disability is the fear that it could someday be _you_ with the skin condition, or the breast cancer, or the arm lost in a car accident. We are all so vulnerable and at any time we might be the one in the wheelchair instead of the person staring at them.
Recognizing the breadth of disability is an important step to fully accepting those in our world with disabilities and treating them as the ‘normal’ people that they are.
Jana – I am a convert from a family with a history of coming from different religions – my dad’s side was Catholic and my mom’s Episcopalian and Methodist. On my husband’s side his family is Presbyterian and Southern Baptist. Between our many-splendored religous backgrounds and being a social creature of some curiosity I have been to Methodist, Catholic, Episcopalian, Presbyterian, Mennonite, Unitarian Universalist, and Southern Baptist since my m.s. became obvious in the last five years.
In the more main line Protestant churches – the Episcopalian and Presbyterian churches I had the experience of the minister and ushers talking to my husband instead of me. Admittedly I was on a crutch (going through an exacerbation at the time) and had an obvious hand tremor as well as being slow walking and sitting. I think (hope) they meant well – but it is a bit disconcerting to be talked over. I have come to believe (having experienced this before) that a physical disability that is obvious and in your face such as an inability to hold something without shaking can be at best distracting and at worst scary resulting in people not knowing what to do or where to look and if they are raised with the “don’t look it’s rude” school of politeness – than the not talking method of dealing with it becomes a natural extension.
The Catholics didn’t say a word one way or the other except that the usher asked if I wanted to sit closer to the altar and told me where the handicapped restroom was. This is a large city parish on a Sunday with two people in wheelchairs that I could see – so at least I was not alone. As we left I was greeted by the parish priest (who knows my family) as was everybody else. I was not greeted by anyone else who did not know me – but than that’s par for the course for every Catholic parish I have ever known.
The Mennonite and Unitarian Universalist were quite comfortable and accepting – -both are rather liberal congregations – with women ministers and a history of accepting the “unacceptable” in our community. (They have a ministry for AIDS patients at the UU church and both sponsor several A.A. and N.A. type groups.) I found them relaxed and welcoming – taking time to look out for me the person and not me the “handicap” but not making an issue of it. If I didn’t believe in the Church it would be very easy to find a spiritual home in one of those two. If I were to take a sabbatical I would attend one of those two for my break.
The Baptist and Methodist congregations (both independent, free-standing churches) were very lovely and cloying and extra attentive and extra reminding me of my special gift as given to me by God. There was also in the Baptist church a not too subtle message given that I should pray for healing because if I had enough faith – after God had recognized me as his special child by letting me have this gift of disability he would then heal me as an example of his generosity and special love for me abd as a lesson to others to bring them to Jesus by the example of my miracle.
I find that I still run into not just the Baptists but other well-meaning people of strong belief who tell me how I can be healed by simply _________ (fill in the blank – praying, going to this or that healing service, seeing this or that minister, etc.) which results in my having developed a number of replies – different ones based on how well I know the person and how nice they are to me about making the suggestion. (My most memorable confrontaion with one pushy person came about after I told him that I was a member of the LDS church after which he told me that God was punishing me and as soon as I left the church and came back to God I would be healed instantly! 😛 We obviously live in missionary territory!)
Most people mean well – whether they are offering a new medically based cure or doctor or clinic they heard about (or their cousin’s aunt’s brother-in-law’s neighbor used to get better from m.s.) or a new prayer or faith healer. They just seem to need to “help” you because they have the answer and you don’t.
I can’t say I am good enough to like being special or invisible – I want to be treated the same as everyone else as much as I am capable of functioning like everyone else. If someone isn’t sure what my problem is I wish they would talk to me about it. They might be surprised how much I have to share and that I am NOT contagious, don’t need healing, and am remarkably visible for someone who is handicapped!
Forgive my L-O-N-G answer – I am afraid I took the opportunity to get off my chest the entire load I was reminded is there when I read your statement of the committee about disabilities with no one on it who was disabled. (Sort of like a committee for the discussion of the Book of Mormon entirely staffed by people who had only heard the first missionary discussion! They know it exists and that it is important but that’s about all they can tell you!) Thank you for giving me the opportunity and for standing up to point out how foolish it is to have discussion of a subject without the experts being there! – Meg
Thank you for answering my question! My experiences w/other religions have not been as varied as yours, but I agree that some faiths are definitely more accepting of physical difference than others. I particularly like my local Quaker Meeting–there are several people who attend who have mobility impairments and they are treated no differently than anyone else! I also like that no one in the Meeting seems particularly concerned about appearance. People dress simply and comfortably. It’s so refreshing when compared to the fussy attire and formality of Mo congregations (a pet peeve–I can walk better in athletic shoes and pants, but I feel I should wear dressy clothes and dressy shoes to church even though they are quite uncomfortable for me…).
Again, thank you for contributing to the discussion and for sharing your experiences. 🙂
I am late in on this discussion, but excited to see this kind of dialogue happening. I am currently running blog/site about disability in the Church, in the process trying to gather as many resources as possible. Unfortunately, so many of the articles and stories in Church magazines and elsewhere too often tell the story of the ‘supercrip’. This type of narrative generally focuses on the enormity of the difference or disability in order to set up the heroic nature of overcoming whatever obstacle lay in their way.
I also enjoyed reading the experiences from other faith communities, as noted above these same problems are not unique to the Mormon experience. Fortunately, you can find bright spots in almost any group as this list of disability resources from other faith groups will attest.
My children have autism and are severely MR, and it was the shabby treatment of our kids by the local ward that started me on the road to apostasy. I already had growing doubts, but the situation with the kids served as a catalyst to explore those doubts. Moreover, the prevailing attitude in the church towards children like mine appeared to be that because they already are destined for the Celestial Kingdom, the church really doesn’t need to provide any special programs designed to assist their spiritual development. My understanding is that things have improved somewhat, especially in Utah, and I suppose that’s good. Additionally, it was impossible for me to fit my family into the linear LDS model of life progression. Letting go of all of that was liberating.
I am a 33 year old mother of two, lifetime member of the church. I was diagnosed at the age of 8 with type one diabetes and MS at the age of 24. I too have frustrations. I really do not know if the church members that frustrate me do so because after all they are just people or if it is their ingrained mormon attitudes that offend me. When I was suffering a rather serious bout with MS a lady told me a story of how her 6 year old daughter helped another member with MS who was stuck in a bathroom stall and how it was a “life changing” event for the whole family. You know what, if a six year old ever has to help me in the bathroom, I sure hope it doesn’t turn into good material for a talk on service. I know that reacting poorly to others hardships isn’t unique to church members, but I also believe it would be easier for those of us with disabilities if we were treated as real individuals and not projects or opportunities for service.
While I agree there should have been disabled members on the panel you mentioned, I’m also a disabled Mormon with a “limp,” and I haven’t experienced any of the things you’ve described. I don’t say that to invalidate your experience, but just to point out that not every ward takes that kind of attitude towards the disabled. Our own personal experiences are not always generalizable.
This post with a 6 year gap from the previous post lets me know that members with disabilities are just not a group we pay attention to. I too am disabled. Instead of getting the “supercrip” or hero treatment ai have been treated in the wards as a “problem child”. Combine single disabled mother veteran member with disabled kid and you have a recipe for disaster. In the past 12 months I have seen a home teacher for about 15 minutes. At least it was a visit. Sometimes I get a visiting teacher message, mostly I don’t. I have applied for SSD and military compensation and the bishops tell themselves whatever they want to believe about SSD and military compensation so that they can pretend that disabled members need no help. I have been homeless more times than I can count, Bishops hiding behind every excuse possible to deny help. Would the church be this huge financial entity worth BILLIONS if weren’t for the soldiers that pay for the freedoms you all enjoy. Should the church just continue to ignore the issue? I know Pres. Monson doesn’t have to worry about what he’s eating, where he is gonna sleep…ect. As a disabled veteran…I now know the truth. The army sends you to so many 3rd world countries to prepare you for the 3rd world living you will have as a veteran. Expected to sleep on the same streets we swore to defend. Paying for the nations freedom with my blood,sweat,and tears, damaging body, mind, soul. Rewarded with pain,lonlieness and poverty. Meanwhile the church looks on and pretends I don’t exist.
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