Mary Evelyn at What Do You Do Dear? recalls what it was like when a little girl walked up to her son, who has spina bifida and is in a wheelchair, at church one day:
And then, without taking her eyes from his face, she said “I feel sorry for him.”
I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs.
Children ask all sorts of question about my son.
Why is he in that? Why can’t he walk? What’s wrong with him? Will he need that thing forever?
But questions are easy. For children, questions have answers.
“I feel sorry for him” is not a question. It is a statement of fact. A revelation. A public disclosure of something I know to be true. Although I fight against it and try to believe otherwise, I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system.
A system that tells her my son’s wheelchair is “very sad.”
A system that tells her he is a “poor thing.”
A system that uses words like confined to, suffers from, and bound.
A system that prefers to see people like my son as victims, as recipients of charity, as less-fortunates waiting to be healed, rather than seeing them as neighbors, colleagues, teachers, and friends.
A system that tells her my son smiles “in spite of” rather than simply because he too is a child and has access to all the same earthly wonders that she does.
Wonders like fireflies, and candlelight, and going fast, and little girls in gauzy white dresses.
In the past nearly 15 years I’ve found that often the hardest part about living with a disability is not coming to terms with what I can’t do, but dealing with the perception that I am more helpless/miserable than I really am.
Despite the many wonderful advances we’ve made in protecting the rights of people with disabilities and including them in society, it seems we’ve yet to remedy the view of the general public that life with a disability is less enjoyable or fulfilling.
But there is hope. Read the rest of Mary’s post for a beautiful example of a stranger who gets it right!
• Couples are flocking to Thailand, the last place in Asia where sex-selective IVF is available.
• The Medical Board of Australia has suspended the medical registration of Dr Philip Nitschke, aka: Australia’s “Dr. Death”, following allegations that he counseled a man who was not terminally ill to take his own life. The board found that he posed “a serious risk” to the health and safety of the public.
Rebecca Taylor reviews the latest teen dystopian future trilogy to hit the big screen:
I…want to thank Veronica Roth for tackling tough issues in biotechnology in a way young people love. I hope this trilogy gives them pause in a world that thinks science can solve any problem. I hope they see that being human is not a problem that needs to be fixed.
All’s quiet on the blogging front because my sister and nephew are visiting for a few days. So, all you may get this week is a little cute screaming nephew blogging.
Cruz is six months old now — and a riot!
Beach day with my beach babe!
I started this blog almost eight years ago as an extension of my pro-life apostolate. It was 2006 and Missouri was in the midst of a heated battle over human cloning, so I already had a special focus on biotechnology here from the beginning.
Cloning and stem cell research were both relatively new subjects to me at the time. I had only really been reading and talking about them for about a year before starting the blog, but it was quickly clear to me the tremendous impact they would have on the future of humanity.
About the same time I was starting out, another blogger was emerging with a similar focus. Rebecca Taylor’s Mary Meets Dolly blog became an instant favorite of mine, opening my eyes to even more threats to human life that I had never considered, indeed never even heard of before.
It’s been almost a decade — nine for Rebecca — and she’s still at it, still educating people on these crucial matters, and she remains a constant source of inspiration and insight to me personally (have you seen the video series we started together?).
Over the years, she’s also been given opportunities to spread the word outside her own blog on other Catholic and pro-life publications, which is why I’m proud to share with you the news that Rebecca recently won first place in the “Best Regular Column – Culture, the Arts and Leisure” category at the Catholic Press Awards.
It is for her column on bioethics at the National Catholic Register. I’ve tried to link to all of her Register pieces as they’ve been published, but if you’ve missed any of them, here they are:
I share this news and these articles with you here not only because I’m so very happy for Rebecca and proud to count her as a good friend and colleague, but, as Rebecca herself noted, the more exposure we can give these “issues” (they’re really much more than that) the better. Sometimes it seems as though we’re screaming into a vacuum, even among pro-lifers.
Oops! The Thai’s did it again!
I have raved about Thailand’s ability to produce some powerfully moving commercials before. Here’s the latest example.
I wonder if they’re as good at making movies. I’ve got a couple of Thai movies in my Netflix queue.
Hello and Happy Independence Day!
I am finally back home after spending the past week in Kentucky. The convention was my main draw up there, but I was also excited to connect/reconnect with some good friends.
At the convention I saw several familiar faces from Missouri Right to Life.
Also in Louisville, I reconnected with a friend of mine from college whom I hadn’t seen or talked to much in the last seven years! I failed to get a picture of the two of us, but I couldn’t help snapping a few of her youngest — the happiest, most chill baby I’ve ever seen in my life!
And in Lexington, after almost a year of calling in once a month for an interview on the Mike Allen Show, I finally was able to do a show live IN STUDIO! Mike even managed to talk my good friend Jason Hall, whom I have done a show with before, into coming on and saying a few words at the end of the show.
(Not pictured: the marvelous Jennifer Longworth, who pretty much runs things around there!)
I hope I didn’t come across too down on the convention. There were a lot of great talks and workshops provided there. I just get so frustrated by the lack of focus from the pro-life movement as a whole on some of these issues of human biotechnology.
Kudos to NRL for having Dr. David Prentice give an update. His workshop was very well attended. Speaking of which, stay tuned for my interview with Dr. Prentice in the next episode of BioTalk coming out next week!
Related: all of my radio interviews are archived here.
Enjoy your holiday weekend, everyone. And, as you celebrate our freedom this Independence Day, take a moment or two to remember the millions of Americans whose freedom has been taken away in this country and pray for its restoration.
“The care of human life and its happiness and not its destruction is the chief and only object of a good government.” -Thomas Jefferson
Human life must be respected and protected at all stages, from the moment of it’s inception.
Bonus random pics from the Bluegrass State:
With my good friend Pam Fichter, president of MRL (Wesley Smith, photographer)
Pam bought me my first mint julep…ever.
Downs After Dark
The National Right to Life Convention is over, but I’m still in Kentucky. Today I’m headed to Lexington to finally meet the good people at Real Life Radio, where I have been a monthly guest on the Mike Allen Show.
Tune in today at 5 pm ET when I will be talking to Mike about my experience at the convention, persevering when the joy of faith is missing, and why the Theology of the Body is about more than sex and marriage.
Click on the image above to listen live.
Today I’m headed up to Louisville, KY to attend the annual National Right to Life Convention.
I’m looking forward to several of the workshops on end of life issues and am especially interested in Friday’s general session on Bioethics War On Humans featuring Wesley Smith and a few other folks from the Robert Powell Center for Medical Ethics.
I attended the NRL convention a few years ago when it was it Jacksonville, FL. Below are a couple of videos I shot and uploaded from two of the workshops I attended. Both deal with end of life issues.
First, Burke Balch J.D. answers the question: When is it Appropriate to Provide or Withhold Livesaving Medical Treatment? from a Catholic perspective mostly based on the writings of St. John Paul II:
Balch is the director of National Right to Life’s Robert Powell Center for Medical Ethics. He also gave an excellent presentation on the danger of legal assisted suicide and the hypocrisy of the “right to die” movement.
Both run a little over 30 minutes each, but they’re well worth your time.
I’ve written several of my own reflections about life in a wheelchair here. Today I thought I’d let someone else take the wheels, so to speak.
Nine-year-old Ella is the daughter of author/blogger Rebecca French. Two years ago she was diagnosed with Juvenile Rheumatoid Arthritis. This year her condition has worsened to the point she finally needed a wheelchair.
Last week, Rebecca asked Ella to to describe “what it’s like” for her readers and she allowed me to share it here with you:
My mom said I had to write this but I’m not completely sure what I am supposed to do. I think I’m supposed to write about losing the strength in my legs.
But honestly it hasn’t effected my life a whole lot. Actually I take that back. It kinda has, but not a whole lot. Honestly all that it has really done is scare my friends away. Well most of them. And it has taken away the strength in my legs and given me big biceps and put me in a wheelchair. I mean I still have a few friends and by a few I mean 1 friend but she’s my best friend and she’s been around people in wheelchairs so she’s not scared. If all my friends were gone id be bored as heck every day.
I’m not really worried about being in a wheelchair my whole life because when I get scared all I really do is remember God has a plan for me. When I remember that I’m not really scared.
Oh and the wheelchair and stuff freaks out my bird. When I try to pick him up he gives me this look like I’m the dumbest person on the planet and then he tries and tries to get away from me.
So honestly other than the birds and friends this hasn’t effected my life a whole lot. My brothers are still annoying and my baby sister still whines. I draw and read a lot and play with my best friend. I still have to do chores and get in trouble for not making my bed. Wow writing this many words is hurting my hands a lot so now I know I can’t be a writer because my hands already hurt after 314 words. Any way I don’t know what else to write.
Very well said! She has accepted this change with such grace and good humor. I am sure she will have no trouble making many new friends in no time.
What I loved most about Ella’s response to her mom’s request is how she didn’t reflect on what she can’t do anymore or has to do differently or or how much she has had to overcome. Quite the contrary!
Her thoughts actually remind me a little of something I wrote a few years ago on my “10th anniversary”.
There is a major difference in the idea able-bodied people have in their minds of what life with a disability must be like and how that life is lived in reality.
Often the prospect of life with a disability or a disabled child is seen as an act of heroism that people either think they don’t have the strength for themselves or aren’t comfortable asking someone else to undertake. Words like “burden” and “cope” are frequently used, but the reality for those of us who live it, is that life with a disability is quite ordinary. It’s sometimes challenging, to be sure. Who’s life isn’t? But it certainly isn’t too hard to handle.
That’s the thing about disabilities. Once they become our realities, most of us come to terms with it (some sooner than others), make the necessary adjustments and continue on with our otherwise “normal” lives.
I don’t think it matters how handicapped you are or how sick. You always succeed in something. God gave us each a gift. -11 year old Garvan Byrne, terminally ill and handicapped from birth
It’s easy to get so caught up in the things that a disability takes away that we lose sight of what is still possible. Thankfully, Ella does not have that problem.
Prior to her injury she was a dancer. A ballerina, to be precise. Unable to dance like she used to, Ella has not let that stifle her creativity. Instead of dancing, these days she focuses much of her creative energy on drawing. And she’s quite talented:
With her mother’s supervision, Ella recently created a website to showcase her art. Head over to Ella’s Doodles and show her some love!
Another way you can help out Ella and her family is by donating to the GoFundMe account that one of their friend’s set up to help raise money to buy Ella a good wheelchair. These suckers aren’t cheap, y’all!