Category Archives: Disability

“I’m not trying to hide anything. I wear it on my sleeve.”

Those words are from one of my favorite songs, “No More, No Less” by MercyMe. These words are true of me in more than one sense. Two years ago, I decided to get a tattoo on my left arm as a way of mourning the loss of its use…

"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." - 2 Corinthians 12:9

The cruciform sword serves to remind me of Christ’s death on the cross for me and that God’s word is “sharper than any two-edged sword” (Hebrews 4:12).  The reference to 2 Corinthians 12:9 reminds me that  God’s grace is all I need and that His strength shows through my weaknesses.

Today, I got a new tattoo, but this one is a way of celebrating the progress I’ve made and the changes in my life over the last few years…

"Bear one another’s burdens, and so fulfill the law of Christ." - Galatians 6:2

I’d like to thank my friend Mike Munster for his most excellent artwork.

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Filed under Autism, Disability

Concerning disabilities and being human…

In this post, I’d like to examine some of the things people say about disabilities and the attitudes behind them. I may ramble a bit, so bear with me…

In my previous post, one of the things I wrote is that I need my friends to believe me when I say I can’t do something. That seems to bother some people. They view such statements as defeatist. I’m not afraid of challenges. My left arm is paralyzed. Sure, I can ride a motorcycle, but if you tell me to clap my hands, I’m going to have to say “I can’t.” I’m not a defeatist; I’m a realist. Please understand that an ability in one area does not imply a lack of impairment in another.

Upon learning that my arm is paralyzed, people often say something like, “I don’t see a disability; I see a person,” or “You seem quite normal to me.” I understand that this is usually in an effort to be polite, but I argue that not seeing the disability means not seeing the whole person. Experience shapes us; we change as we adapt. My disability affects my life experiences, so it has had a significant role in forming the person I have become. Another thing to consider is that these statements rely on the assumption that disability makes one less. This is called “ableism.”

The Oxford English Dictionary defines “ableism” as “Discrimination in favour of able-bodied people; prejudice against or disregard of the needs of disabled people.” Fiona Campbell provides a more academic definition: “A network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical, and therefore essential and fully human. Disability is then cast as a diminished state of being human.”

A supervisor once said to me, “Disabled people don’t ride motorcycles.” He was well aware of my disability. He continued on to make his point, which was that, since I don’t “act disabled,” I can’t ask for the accommodation I was asking him for. This stems from the same kind of thinking as the more polite comments I mentioned earlier. In essence, he was saying that disabled people look and act differently from “normal” people, and because I look and act in ways that fit his standard of “normal,” I can’t be disabled. It seems pretty silly when I put it that way, doesn’t it?

I am fully human AND I have a disability. Let’s start with that…

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Filed under Disability, Discrimination, Work

A confession and a challenge to my fellow Christians…

I have a confession to make. I haven’t written anything here in quite a while, but not because of a lack of ideas. It’s because I’ve been struggling with some of the same junk I’ve struggled with my entire life. Like most aspies, I’m well aware that I’m different from most other people. Even if I were unable to observe for myself that there are differences, people often point them out to me. I have often thought that I simply do not fit anywhere, and because I do not fit, there is no place for me. Because there is no place for me, I should not exist. I have been thinking up ways to end my existence since before I was a teenager.

I have been wrong.

In 1 Corinthians 12:12-20, the Bible tells me:

12 For just as the body is one and has many members, and all the members of the body, though many, are one body, so it is with Christ. 13 For in one Spirit we were all baptized into one body— Jews or Greeks, slaves or free—and all were made to drink of one Spirit. 14 For the body does not consist of one member but of many. 15 If the foot should say, “Because I am not a hand, I do not belong to the body,” that would not make it any less a part of the body. 16 And if the ear should say, “Because I am not an eye, I do not belong to the body,” that would not make it any less a part of the body. 17 If the whole body were an eye, where would be the sense of hearing? If the whole body were an ear, where would be the sense of smell?18 But as it is, God arranged the members in the body, each one of them, as he chose. 19 If all were a single member, where would the body be? 20 As it is, there are many parts, yet one body.

It is true that I do not function like most of the people around me, but neither does the nose function like any other body part. The conclusion that I do not fit does not follow from the premise that I function differently. I confess that I was wrong to walk away from the body as a young man, but I realized that and I am back. However, I know that I’m not the only one that left because of feeling different.  Many have even been asked to change or leave. Continuing in 1 Corinthians 12, we read:

21 The eye cannot say to the hand, “I have no need of you,” nor again the head to the feet, “I have no need of you.”22 On the contrary, the parts of the body that seem to be weaker are indispensable, 23 and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, 24 which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, 25 that there may be no division in the body, but that the members may have the same care for one another. 26 If one member suffers, all suffer together; if one member is honored, all rejoice together. 27 Now you are the body of Christ and individually members of it.

My challenge to my fellow Christians is this: Reach out and reconnect with our missing parts. Help them find that place where they honor God by functioning as they were made. Recognize that, if they don’t seem to fit, you may be the part needing adjustment. I invite you to learn more at http://www.keyministry.org/.

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Filed under Church, Disability, Encouragement

Concerning social anxiety and meltdowns…

Recently, in an online group of adult aspies I belong to, meltdowns have been a topic of discussion. This is a very serious aspect of Asperger’s syndrome that can create tremendous social struggles. It is among the reasons some adult aspies fear to leave their homes. With the permission and encouragement of the other members of that group, I’m going to use some of the insights from that discussion, as well as my own experience, to help my readers understand meltdowns and how they relate to the social anxiety so many aspies experience.

I want to begin by defining what a meltdown is. According to Merriam-Webster, the definition that best fits what I am describing is “a breakdown of self-control (as from fatigue or overstimulation).” Notice that it does not reference autism or Asperger’s syndrome. I believe it is possible for anyone to experience a meltdown. As I told a neurotypical friend not long ago, I believe anyone would display the same behaviors after being tortured sufficiently. Also, notice that a meltdown is different from a tantrum, though they may look similar, especially in children. The purpose of a tantrum is to manipulate, as most parents are well aware. A child throwing a tantrum will stop once they get what they want. A child having a meltdown is not really concerned with your response to the behavior. The only thing on that child’s mind is the condition that triggered the meltdown. The meltdown will continue until the child recovers from it, which won’t happen unless the condition that triggered it is changed or removed, or the child is distracted from it. The same is true of adults.

What triggers a meltdown may vary from person to person, but there are some themes that came up in my discussion with other aspies. All of us mentioned some form of sensory overload as a trigger, though some of us expressed specific sensitivity to different things. Also mentioned were forms of information or emotional overload. Here are some specific examples from our discussion: sudden or repetitive loud noises, high-pitched noises, flickering (or fluorescent) lights, bright lights, unexpected changes, disruptions in routine, crowds, other people getting too close, and more information or emotional data coming in than one can easily process. This is not an exhaustive list, and it should be noted that triggers may vary between individuals. I, for example, enjoy the sound of a motorcycle, while many aspies will struggle with it. If there is an aspie in your life that you care about, it is a good idea to learn what his or her triggers are, as well as to identify signs that a meltdown is approaching. You just might be able to help…

I believe most of us aspies are aware when we are approaching meltdown, but if we see no immediate way to change or get away from the trigger, we will likely feel helpless, which only makes things worse. Below are some descriptions of how it feels from some of my aspie friends:

“I get tense. My answers go from overly verbose to overly terse. My breathing changes, my jaw starts to clench and I get stomach cramps. Recognizing all these symptoms has helped me avoid major meltdowns for several years now, but not always- sometimes they still sneak in. I will become forgetful about things I shouldn’t such as eating, drinking water or even going to the bathroom!”

“I’ve sometimes predicted meltdowns an hour before they even happen because I can ‘feel’ when something bad’s about to happen. later warning signs include pacing back and forth, uneasiness, headaches/stomachaches, sweating, and one time I even fainted.”

“For me it feels like most people describe as a panic attack – stomach aches, trembling, trouble breathing and then feel like crying. I feel like I have to escape the area and hide by myself – I get really stand-offish and I also forget to eat, sleep or do basic things that I need to.”

“I freeze, just stop functioning if it’s really bad, and I feel like I’m so panicky I’m going to explode. I pace, I rock, I flap (my ‘flapping’ is actually with clenched fists.) Sometimes the stimming helps dispel the energy. I can’t talk.”

“I feel suddenly overwhelmed, my heart rate speeds up, I start to breathe fast, feel very panicky, lose any ability to speak coherently or at all, and all I want is to get out of there FAST. Sometimes I burst into tears. It’s a horrible feeling.”

As you can see, the descriptions are very similar, and they give some clues as to external behavior you can watch for. Pacing, shaking, and becoming unusually quiet are external signs many of my aspie friends mentioned. Another friend of mine mentioned that people have told him they feel uneasy and intimidated when he approaches meltdown. I’ve heard similar about myself. I can assure you that I will not intentionally hurt anyone, but if you feel that way with me and are unsure how to handle the situation, I would suggest that giving me some space and a bit of quiet is probably the best course. I am very open to discussing this with others, though, and I have made a few people close to me aware of what triggers I struggle with, what signs to watch for, and how to help me recover. I strongly encourage you to discuss this with any aspies you care about. I also encourage my fellow aspies to open up to their friends. It has helped me tremendously.

I hope at this point that my readers understand that this is a real struggle and one that we can’t always control. It’s certainly not something we choose to do, and the fact that you may not see or understand the trigger doesn’t make it any less real. Many of us are afraid to leave our homes because we may find ourselves falling apart in an unfamiliar situation with no help in sight. Call me nuts (many aspies will), but I’m sometimes willing to risk it, and I have had meltdowns around other people. Some people have helped me when I needed it, and others were less kind. I suppose the bright side is that I know who my real friends are, and I hope other aspies are encouraged to step out into this messy world. On behalf of those that do, I’d like to say that I don’t believe anyone should have to apologize for a disability. I don’t think any person with a heart would expect, much less demand, an apology from a wheelchair user who needs a door held. I have two arms, but I think any person with a heart would be willing to offer brief assistance after I explain that my left arm is paralyzed. In the same sense, I believe a person who feels offended by the behavior of an aspie having a meltdown should be willing to understand after being given an explanation. To those who disagree, I ask: What if it were you?

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Filed under About Asperger's Syndrome, Disability, Social Interaction

Who wants to be in the movies?

Not long ago, I watched a movie with my family about a young lady you’ve probably heard of – Bethany Hamilton. It’s an awesome story, and I would certainly recommend the movie to friends, but it left me with a couple of questions. Before I ask, let me assure you that I have no intention of making light of Bethany’s success. Having lived nearly half of my life with only one usable arm, I can assure you that I understand the magnitude of her achievements and that I believe she deserves the recognition she has received. That said, I had to ask…

We love watching these stories, so why don’t we see the great stories right around us? More importantly, why don’t we step in and be a part of the story? You might tell me that you don’t know anyone like Bethany Hamilton, but she wasn’t the Bethany Hamilton everyone cheers for before the events the movie was based on. I don’t think anyone involved realized what was really happening until they reached a point, looked back, and said, “wow, that was awesome!”

You might also ask what role you would play. Well, that depends on the story. I can tell you something that all people need, especially those with disabilities, that Bethany had in abundance: encouragement and support. The Bible tells us in 1 Thessalonians 5:11 to “encourage one another and build each other up.”

I lost the use of my left arm when a car hit me on my motorcycle. I never thought I’d ride again. I’ve since ridden over 45,000 miles because a friend encouraged me to try. My wife and I have started an annual motorcycle ride for autism awareness, and I’ve had the privilege to be an encouragement to that friend’s daughter, who was diagnosed with Asperger’s syndrome shortly after I was. It all started because someone had a little faith and offered a little encouragement.

In John 9:1-3, Jesus and his disciples encountered a man who had been born blind. Jesus’s disciples asked him whether the man or his parents had sinned to cause him to be born blind. Jesus told them, “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.”

Take a good look around you. You might be surprised at what you are missing.

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Filed under Disability, Encouragement