Wednesday, October 24, 2007
"He will never walk"
"He will never read"
"He will never have a normal life"
and the worst of all
"He will always be a vegatable"
Each of these statements are offensive and cruel in their own right, but they are particularly hurtful as they come from people who are perceived to be "in the know" about something. They are the professionals, the experts. However, I would contend that they are definitely not either professional or expert because someone with the life experience to go along with professional training would never say such things. When I hear of such statements, my response is not that the person making the statement is a professional. My response is that the person making such statements is a mess. He is a person using a position of power to destroy the hope of desperate people; be they the individual about whom the pronouncement is made or that persons loved ones and family. How can one respond to such pronouncements with other than grief?
But we probably all have known people who were told they would never walk, or never speak, or never whatever who are now walking or speaking or doing the thing they would never do. Because we believe the professionals, we call the fact that the people can do what they were not supposed to do miracles and I don't doubt that many people do experience miracles in their lives. I would be the last one to tell you that if you have been healed of something or are now able to do something that no one thought you would be able to do that you have experienced something miraculous in your life. But I would be the first to say that the pronouncement made by supposed professionals which may have led you to believe that your natural healing (which in itself is a miracle of sorts) have a good chance of being flawed.
I personally know, for example, a person who a doctor said was in a "persistant vegetative state" (I hate that phrase...calling someone a vegegable only provides an excuse for that person to be treated as something other than a human being) and was supposed to remain in such a state for the remainder of the person's life. Well, that person is a very active individual right now. Sure there are remaining evidences of the original disability, but if that person is in a vegetative state, than he is the first green bean that I have ever met who can communicate, respond to God, lead others to understand God and disability through emails and personal discussions, take care of their needs, and do a myriad of other things.
I could write all day on the whole idea of professionals, particularly medical professionals and down's syndrome. Man, is there a lot of misinformation being given about people with down's syndrome by medical and other professionals. Particularly those linked to the abortion industry. As one of my professors, Dr. Bob Henderson, used to state about ill informed people, "unencumbered by knowledge, he speaks with great authority." But I may have never known a person with down's syndrome personally, yet I can make all kinds of prounouncements about who people with down's syndrome are.
I will also tell you that there have been a couple of times in my life when I have been in the presence of someone making a pronouncement about what someone will never do. The last time was when I was discussing how a teacher could help a young man with severe cognitive disabilities develop some basic speech. As the child stood before us, the teacher said, "He will never be able to communicate through speech." I went off on the teacher. In a nut shell, I said "How dare you say such a thing! How do you know what Johnny (not his name) will or won't do! I suspect as well if he does not develop the ability to speak while you are his teacher it is probably your fault, not his!..." Anyway, the teacher apologized to me and to Johnny and I think that was a teachable moment. How much easier if the teacher has responded, "I would love to help Johnny to communicate through speech. How can we make that happen?" How hard would that have been?
But it is true with all of the "he will never..." pronouncements. Why not say, "Here are some ideas of what you might do to help him so that he might be able to walk again, or speak again or whatever again." "Here are some ideas of things you might do stimulate or potentially engage your family member who is in a comatose state." In none of the statements did I say that the person would get better. All I did was present the possibility of improvement and gave both the individual with disability and the family some hope. If the were to ask me, "Will Johnny ever walk again?" My response would be, "I really don't know. There are some people who have been able to recover, but they are very rare. Here are some ideas of things you might want to try to help him."
The other side of professional opinion, is the incredible good which can come from what a professional may say to people to encourage or praise them. I have experienced many occasions where I will have made some comment to someone that literally impacted their lives. Perhaps I said to an instructional assistant in a special education classroom that she has a knack for working with children with autism and ought to consider becoming a teacher. Five years later that person approaches me to say that that small comment was the spark that caused her to go back to school to get a credential. Or perhaps something is said to a person with a disability, or even a simple act of kindness, something that you don't give a second thought about, that impacts someone for the good.
Those of you who are professionals who might be reading this must remember the impact you have on people by the things you say. Now obviously you shouldn't tell people things that are not the truth. But you must also temper what you say with the fact that you do not absolutely know what will happen in the future for a person, so if you must err, err on the side of being hopeful.
Tuesday, October 16, 2007
I have a particular responsibility as a trainer of teachers of students with severe disabilities. I am in the sometimes unenviable position of training community experts (teachers). I love that opportunity, but there is great responsibility that comes with that opportunity. I have to be very circumscribed in the language I use, because it will be copied by the community experts I am training, and then modeled for the community. I am therefore very, VERY sensitive about issues of language.
Don't get me wrong, I am constantly joking with my friends with cognitive disabilities. We call each other turkey or old goat. It was particularly fun when I learned the ASL sign for turkey cause now I can tease friends across the sanctuary during church! We tease, but I am careful to tease in a way that does not demean, or particularly in a way that might be misconstrued as being a jab at their disability. If I err, which I sometimes do, I am quick to apologize to the person and to those listening.
I personally also do like to use the phrase, "people with___" when necessary to describe a person with a disability. There are those who reject the phrase as being politically correct, or not being a correct use of the English language. However, I embrace the phrase, I embrace its cumbersome nature, because it once again reminds both me and those listening that I see the person I am speaking about by using the phrase as a person first (the reason for the phrasing).
We also don't want to give people permission to use demeaning language by laughing at their jokes, however well intentioned, or not calling them on their use of language. I remember once getting into a cab in the pouring rain. I was soaked. When I got into the cab, I said to the driver, "I am sorry I am getting your seat all wet." He responded, "Well at least you aren't a (racial slur)." I responded, "Pull the car over I'm getting out" and did so. Perhaps in the future he would not be so quick to assume racist comments were acceptable.
However we do similar kinds of things in our language about disability. In the previous entry, I pointed out a video where the speaker explains the use of the word "retard" or the phrase, "don't be retarded" as derogatory phrases basically equivalent to ethnic slurs. However, it can be much more subtle than that. Jokes about about low intelligence can be subtle, but should not be tolerated. But if we don't speak up about such uses of language, we can be sure that no one else will. We are the experts. We should be setting the tone. If nothing else, negative language will be curtailed or at least apologized for in our presence, and both the speaker and listeners will be exposed to the potentially damaging nature of language.
Finally, language may be considered "juvenile" but must be taken with the seriousness with which it is communicated. I had a delightful time riding home from the beach this past Sunday with a friend. He is a man about 45, but his language is limited to phrases like "Santa Claus" or "Christmas" or "toys" or "cars" or "candy" or "comer" or "Ho Ho Ho" or "Christmas tree." Obviously he is someone who particularly enjoys the Christmas holidays based on his language alone. As I sat with him I had a 20 minute discussion which centered on these phrases, but was as adult as possible. I didn't treat his discussion of "toys" as cute or juvenile. I discussed toys with him in the same manner I would discuss the Lakers with another friend, or music with another friend. It was like I attempted to validate his language choice by my interest, my participation in his language and the seriousness with which he discussed the subject. He was very intent on cars for example, and would literally grab my face to turn it toward him to tell me the word cars, and he wasn't laughing. My response was to have that discussion with him in a respectful adult manner. I am sure people around me thought the whole thing a bit ridiculous, but at the same time, he had my undivided attention. If someone tried to interject something, I would respond, "Excuse me I am talking to Eddie." The importance of his perspective, his preferences, his opinions was validated by my interest.
Friday, October 12, 2007
I found a video at a weblog called Kei Unlimited. It describes the use of the word "retard" from the perspective of the brother of a girl with down's syndrome. The speaker's name is Soeren Palumbo Fremd.
I thought I would share it here. You can view it at the bottom of the page.
The weblog address is,
Tuesday, October 09, 2007
I was recently visiting another blog (nicea.blogspot.com) where there were
discussions about Barth's ideas on election. These postings caused me to wonder
about election as it relates to individuals with mental retardation. There are
those who would say that by virtue of impaired cognitive abilities, these
individuals have been elected and are on the salvation fast track. Interesting
that biological conditions could have such spiritual implications.
Let us assume two things, for a moment. First, that people are created by God in God's image. So when God tells Moses, "who makes the mouth of man" (Exodus 4:11) He is implying, "I made your mouth the way it is." In the case of Paul who asks for a disability to be taken from him, his "thorn in the flesh" God's response is "My grace is sufficient for you my power is perfected in weakness" (2 Corinthians 12:9). So first, people are made the way they are, they are not mistakes. Secondly, if people with severe cognitive disabilities are automatically saved by virtue of their impaired condition, a view held by some, then salvation efforts on our part are unnecessary (a reason I have been given at times for a lack of involvement by the church towards such people). Now obviously you may not agree with either of these propositions. Maybe you think disability is not an expression of God's creative range. You might also think that people with cognitive disabilities, particularly severe cognitive disabilities are not saved even though they have limited cognitive ability restricting their ability to respond to the gospel message. I will give you both of those points. I will give you that the issues I am describing in a very cursory fashion need much more research and thought.
However, if God has placed among us, people that He designed, who He plans to "save" simply by virtue of the fact that they have a limited opportunity to respond, well, it just seems to me that I might pay attention to those people in order to understand what God is telling me about Himself and about myself by putting people with such characteristics in our midst.
If people are not given a pass regarding salvation, then how would a loving and just God facilitate salvation for such people? Could there be a kind of a community component to salvation for such people? I note in the passage where the paralyzed man is lowered through the roof (Luke 5:20) it says "Seeing their faith, He (Jesus) said, Friend, your sins are forgiven you." Seeing the faith of those who lowered him through the roof, he forgives the disabled man of his sins. Very interesting. He doesn't say, "friend you are healed," he says "friend your sins are forgiven you." He does later say, "get up and walk" but only to illustrate that He has the power to forgive sins. So it could be that God is looking to us those around people with disabilities to show our faith such that even something as powerful as the forgivness of sins might be seen in another.
Finally, whether or not people with disabilities, particularly those who are born with disabilities are reflective of God's creative range, all disabled people are people who must be respected as people who are equal as people, who are loved as people, and who are valued people. I remember many years ago when a light came on for me that everything in the Bible that I cling to as a Christian applies equally to people who are disabled as well. I had so "othered" people with disabilities, that I didn't see the Bible as even applying to them. I think many people still do that today. They do that in their actions, they do that with their questions. A good friend asked me the other day "How do you deal with people with disabilities in counseling when they 'play games' in counseling using their disability as a crutch?" My response was, "How is that different from any other person who plays games in counseling? How would your response be any different for the person with a disability than any other person?" Can you see how that question sees a person with a disability as something different than just a person?
I have grown to believe that people with disabilities are designed to be as they are because they are critical, they are an essential part of the body of Christ. People with disabilities change the people around them and the enviornments around them, and I think those changes are far and away mostly positive changes. That is not all they bring to a social environment, but it is an important part of what they bring to a social environments.
So after 300 postings at this blog, I still wrestle with the questions I had at the beginning. But God is teaching me and I am gaining new insights. May God grow us all such that we see people as He sees them.
Sunday, October 07, 2007
How do we come to understand what it means that we have not yet changed? What do we do with the knowledge that inspite of knowledge about disability, we refuse to change? We can take an exhortation to heart and become something different, or we can kill the exhorter; even though he speaks to us in a righteous anger that strikes us at the heart of our traditions, at the heart of the way we have always done things, or at the heart of the way we have come to do things.
Jesus faced this question when he entered the temple at Jerusalem and saw all the money changers and sacrificial animals being sold. At face value, he might have said, "These church leaders are simply trying to make things easier for those who are here to worship." But he saw what was actually happening. He saw the sin that is so much a part of who we are that we are not able to see what we should be. We embrace our sinfulness to the point that righteousness is rejected because it not even recognized as it stands before us. What else could the reason be for the rejection of persons with disabilities? Particularly in the light of information about the treatment of people with disabilities by society.
In a whole variety of ways, people with disabilities confront people around them by their very existence. They cause changes in their environment, but only if the environment chooses to accept them. If they are rejected, no change is necessary.
A child with a disability is born and is sent to an institution.
A mother is pregnant with a child with down's syndrome and has an abortion.
A child is born with a disability and the father runs away from his family.
The church and its agents have to change...
A man with mental illness comes to a church and is rejected.
A girl with down's syndrome comes to a junior high youth group and is rejected.
A woman has a mild disability and is rejected by the Bible study.
Mothers of children with disabilities come to a nationally known Bible study group and are rejected. The leader is confronted but the rejection continues. Rejection not only continues... rejection is embraced by the leadership.
The confrontation of disability should cause change, and the change would move us in a direction which would lauded by God himself. Jesus would turn over the money changing tables and drive out the sheep. We gather the sheep up, set up the money tables again and kill Jesus.