“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Thursday, December 15, 2011

Providing what is needed

I heard a story recently about an interaction a man had with his son.  His son experienced many disabilities including autism and epilepsy.  One day as they were driving together, the son who is quite bright said to his father,
"I wish you could understand what is going on inside of me, inside of my head."
The father's interest was piqued.  "Can you try to explain to me what it is you are thinking about?  What is going on inside of you?"
The son replied, "You treat me as if I have a behavior problem, but what I have is mental illness."
The fathers eyes were opened and his relationship with his son changed dramatically.
There is a difference in how we interact with people when our expectations are in line with their abilities.  You have the right to expect me to act in a particular manner, because my thinking is not impaired by mental illness.  However, if I am experiencing mental illness, now your expectations will radically change.  You recognize that there are things I can be expected to do, to understand, ways in which I will change, and many other ways in which I cannot change even though it might be my desire to do so.  The result is that although you still have expectations for me, you will have to change your expectations of me.  You can try to punish me in an effort to change me, and perhaps some kind of change might come from that, however, you aren't going to eliminate my mental illness, and will probably only exacerbate it through punishment.  Your punishment will seem to me to be irrational and random.

Too often people who either do not have a child with a disability, do not experience disability themselves, or through their choices have no friends who experience disability.  But will then act as if they can speak into the lives of those who do have those experiences, as if they know something.  Well they shouldn't because they don't. 

If you want to speak into the life of a family of a child with a disability, here are some things you might say.
Is there anything I can do to help you?
I would love to keep an eye on your child for you sometime.
Is your family available for dinner sometime?
We are having some families over for a big Christmas party and would love to have you bring your family!
Begin by choosing an individual or family as friends.  You will then learn what you might do to assist and it will probably be something simple, but different from what you had expected.



Barbara @ TherExtras said...

Perfect for this season of giving, McNair!

Blessed Merry Christmas!

Anonymous said...

you know, i once heard in order to heal, you need to allow the dirty things to come out... well, this is my attempt to let my dirty things come out. i lived with a disability for a long time now.. and i often get to treated like a second class citizen... ppl seem to think they HAVE the RIGHT to expect things i cant give.... after years of being treated like this, i feel going to a top of a cliff and yelled out so loud, and ask God to give me justice.

Miranda said...

perfect indeed, coming from someone who might know a thing or two about being lonely around the holidays with a disabled loved one... always grateful for a warm invitation to celebrate with friends who have compassion

Anonymous said...

Many years ago, my first experience with disability was with my younger brother who seem healthy until his high school years when he was diagnose with a stage 5 lupus (SLE). His fight ended five years later. Watching him live and adjust to the physical pain was heart-breaking.
When asked about pain relief, I could not because it would interfere with his treatment. And,caring for your sick brother while attending college yourself was hard but necessary part because of the tight family ties and culture. Comforting your brother when his friends abandon him was difficult. Looking back, my brother left clues about his impeding death and was stronger than anyone I have known. While alive, he volunteered and served in youth ministry. At his funeral, the church was pack. He touch so many lives while alive. I am reminded by a saying, "Don't send your flowers when I am dead and can't enjoy it. Instead, show your love when I am alive (author unknown)." A few years later, I attended my 2.5 years old niece funeral. She was born with a disabiling disease. Her mother, my sister, refuse to pull the plug on her daughter dispite knowing the outcome because of her faith and upbring. My niece death save six children at Loma Linda University as her organ went to them. Many years later, my life change when my own child was diagnose with autism and severe speech-delayness. When looking for help, my wife and I tried clinical method which did not help. We look into special private program, which did not help. Finally, while on a local playground near our home, I spoke with a parent who had success with a local public school program. Many years has pass and my child is being mainstreamed into regular classroom program and any sign of autism has disappeared. I am grateful to the local school district for helping my child. As a family, we are stronger. And our love for our child is endless. We educated our friends on our son condition and loss some. While, others have been inspired. Keep up the good work and god bless.