We have fought so hard for this day. So much grace has brought us here. So many mountains are behind us and still so many lay before us, but we were so ready to celebrate this day. Today was a day that we had waited so many months for. It is the day that my daughter begins her special education journey. Sadly, I was shocked and then deflated last night as I saw the comments that the president of the National Education Association (NEA), Lily Eskelsen Garcia said about students like my daughter. I tried to be positive, but honestly, a few tears escaped from my eyes. I looked at my daughter who has worked so hard to get here and has so many great lessons still to teach us ,and yet, before her first day, she is labeled by the president of her future educational system as “chronically tarded and medically annoying”, while other students that have less outward brokenness are given the title of talented and gifted. Somehow, the moment before us began to fall flat for me no matter how hard I tried to reason it away. How has this woman, with such arrogance and lack of respect for her most specially GIFTED students landed the job of president of the NEA?! IF she feels that it is acceptable to publicly (or privately for that matter) call these precious human lives derogatory names, then I hope someone has the nerve to tell her that she is the one who is missing out on the blessing of genuinely serving such a special group of people. These children already face ten fold more than most “typical” students do just to get through the day and they do NOT deserve to be treated this way by ANYONE, let alone the president of the NEA!! This attitude is so pervasive in our society and I pray every morning that I won’t become calloused and indifferent, because this mindset is a critical issue that is stripping our society of the value of human lives and this mindset’s tentacles are dangerously far reaching.
I have given my life to running a non profit for people with special needs who are transitioning out of the school system and I have a sister who was blessed with Down Syndrome. She is one of my most trusted friends and one of my most respected teachers. I cannot even fathom the sheer number of sweet babies diagnosed with Down Syndrome that are not even given the chance to live out their lives let alone be embraced by society as adults. I work day and night to find jobs for my friends with special gifts. I lose countless hours of sleep over the things I have witnessed. I have seen hundreds of special needs adults wasting away in group homes who have been stripped of their dignity and worth. These are incredible people with so much to offer us, yet they sit in various places with nothing meaningful to do with their lives, so over time, they will inevitably get lost in a world of dream because the present emptiness is just too much to bear every single day. These are human beings who have limitations in their bodies and minds but are so fully alive and well in their spirit, which, if we are honest with ourselves, is precisely the places that we “typical” folks are most broken…in our spirits. Furthermore, just because their bodies might have limitations, doesn’t mean they feel any less than we do, in fact, people who have special needs are far more sensitive emotionally because they have been so closely associated with difficulty, hurt and pain.
I will tell you though, that I will not be defeated! I will continue to hope recklessly for my daughter, my sister, my dear friends and for those whom I have yet to befriend! I will see the silver lining in this! The silver lining that Lily Eskelsen Garcia did do something positive through her ignorance. She shed some light on the discrimination that people with special needs deal with everywhere they go. I can tell you because I have firsthand experience, but I can choose to hang on to hope because there are so many good people in this world. Good folks who will join with individuals with disabilities, young and old, that have been specially made by a sovereign Lord who has a plan and purpose for their existence and His plans are always good! So, today, I will send my daughter to school with a pit in my stomach and a lump in my throat with the faith of a mustard seed that the best days are ahead of us, and that is all the faith God needs to move the mightiest of mountains!!
I walked through the doors of Havenwyck hospital only to be immediately greeted by another set of heavy duty locked doors that would only open after being buzzed in by a secretary who sat in uniform behind bullet proof glass. I could feel the oppression the moment I pulled into the parking lot. The heaviness was all around me and I could not help but shudder when I saw the sign that indicated the direction in which to go to find the Children’s unit.
Havenwyck is a psychiatric hospital that treats children, youth and adults in psychiatric crisis. Behind the bolted doors were people, real human beings battling incomprehensible pain to which they could no longer cope. Hurt so deep that reality became just too difficult, the darkness suffocating them so that joy was replaced with deep sorrow, peace was exchanged for chaos and hope turned to despair.
I was able to peek into the room where I would be presenting before any of the patients could get a look at me. I was breathless as I stared at this group of people looking for hope, and I could only feel reverent honor to have the chance to direct them to the only authentic source of real joy and secure hope and genuine peace. This was a place overcome with darkness and I had not only a light, I had The Light and I was struck with the reality of how all of these people were being devoured by the enemy. Oh, how this place needs the church! Before I walked in, I quickly reminded myself to listen. I have learned enough by now to know that I would be better off to do more listening than talking, because I knew that I would surely end up walking out of there a changed person with a depth and maturity from hearing of the painful experiences of other people that, like you and I, are deeply loved by our Savior. I breathed in deep and asked for the Holy Spirit to guide me as I walked through the door with a broad smile and gentle eyes. Turns out I was right, the experience changed me radically and I was reminded of a profound truth that God can always make something beautiful out of the ashes. The most amazing part, though, is that He will use you and I as tools to transform the ashes into something beautiful. I want to tell you that I don’t speak of beauty and ashes flippantly without really knowing what it’s like to feel like a part of my life is turning into an ash heap. I have buried a child. I have sat in a room where professionals discussed one of my children as they were trying to decide if she was developmentally disabled, mentally ill, or both. I am haunted by goodbyes that I have said to foster children that I have loved as my own because I know that I did not send them home to anything close to their happily ever after. I struggle with holding on to the immense pressure of running a non profit when you are trying to turn fifteen cents into a dollar along with trying to balance life in ministry. I have felt the unforgettable sting of failure. Through every season and every trial, my life has become richer, fuller and more beautiful because of the unfailing faithfulness and grace of our loving Heavenly Father.
So I can confidently urge you to lift your eyes and look for the beauty in your own ashes. Lift your eyes to the one that can make ALL things new. Pour yourself out on behalf of others, because when you give to the point of sacrifice, miracles happen, lives are changed and our own hearts are healed. I know that some of us are already working right on the front lines of battle but you are growing weary and are not sure how long you can continue, remember that His yoke is easy and His burden is light. Others are going through the deepest grief, remember to hang on to the Hope found in Jesus, because that kind of bravery will move the highest of mountains. Still others of you are stay at home moms and not feeling very important, remember that you are forming our future, and there is no higher calling. To the parents raising a special needs child, remember that you have been blessed with a special gift from God. Others are working a monotonous day job that doesn’t feel very spiritual, remember to continue to work diligently and choose to live simply so that you can give to others less fortunate than you. Some of us battle invisible foes like anxiety or depression, don’t ever be ashamed of your story, for it could be the very thing that brings others out of the dark.
We live in a world that is losing hope and giving into fear and we are the soldiers that are keeping the flame alive. We may feel like we are being overcome, but we know the power of our King and we know how our story ends. The journey may be full of difficulty, but the ending is better than the most beautiful fairytale. As we keep our eyes fixed on eternity, let us overcome evil with good by bearing each other’s burdens, weeping with those who are grieving loss, encouraging the heavy and downtrodden, carrying the weak, caring for the poor, remembering the forgotten, including the outcast, esteeming the lowly, protecting the vulnerable and being patient with the simple. Through one encounter at a time, we will help turn each others ash heaps into something breathtakingly beautiful for the glory of our Lord and Savior.
Thank you for seeing us today as we courageously and cheerfully greeted you and invited you over to our business display. I saw your face clearly and I could see the decision play out in your mind. Your eyes gave me a window into your soul that made the split second decision of whether or not to add to the statistic of the 80% that walk the other way. I could see that you almost gave in to the easy out to politely wave and then uncomfortably rush out to your car. You could have avoided us and the world would never have noticed your oversight, but I know that something inside of you convinced you that you would be missing out if you did. I just want to thank you for smiling wide and making a beeline straight for my friends. You didn’t beeline for me so that I could guide you because I am familiar and average like you, but you headed straight for my beautifully unique and extraordinary friends with special needs, and let me tell you, you made their day.
I didn’t catch your name but I wish I could tell you that you are one of the beautiful few, and I am sure you know now, that you are one of the lucky ones. Thank you for learning our names and spending a few extra minutes engaging in broken but sincere conversation. Thank you for enthusiastically expressing your appreciation of their hard work. Thank you for letting them teach you and change you. Thank you for looking them in the eye and listening patiently. Thank you for handing your money for your purchase to my friends with Special Needs and not to me. Thank you for directing your questions to them and not to me. Thank you for speaking loudly through your actions that you believe that my friends with special needs have value beyond measure. I pray that your actions erased the all of the negative reactions and grimaces of the day. I pray that my friends will remember the way you treated them, because your actions spoke truth.
I wish I would have learned your name and your story. I wish I would have said more to encourage your young heart and tell you that, though you were young, you were so very wise. I wish I would have told you that you gave me hope that integration can and should work. Thank you for helping us establish a new normal. I want to thank you not just for buying so many of our amazing products, but I want to thank you for ignoring me through the entire process. It is so foreign to me to not have to be a buffer for my friends, and today you gave me the privilege of standing back and witnessing my friends spread their wings, soar and succeed completely INDEPENDENTLY! There is so much negativity in the news today, so because I can’t tell you in person, I wanted to put it out there to encourage others like you encouraged me. You were an everyday hero today because you chose to defy the status quo and you chose to embrace a new normal where people with special needs are treated with dignity and respect. And hey, it might just happen that maybe you will come across this blog someday and smile because you know that it was written about you, and you will realize that you played a part in changing the world for good today.
Recently, I read with great dismay, your comments regarding the call you made for killing disabled infants under Obamacare. I am deeply troubled by the position you hold, which encourages public and private healthcare providers to deny care to severely disabled infants with the intention of infanticide in order to avoid wasting resources on human beings that, you claim, will not have any quality of life and who will be a burden on their parents. You argue that, essentially, the right to life is based on a being’s capacity for intelligence and to hold life preferences, which relates to a beings capacity to feel and experience pleasure. As the Co-Founder and COO of Dutton Farm, a cutting edge non-profit organization that provides employment opportunities and life skills training to adults with disabilities in Rochester Michigan, I find multiple flaws not only in your moral and ethical stance, but also with the very premise of your argument, that disabled persons cannot feel or experience pleasure or pain, maintain no quality of life and contribute nothing back to society as a whole. Your outlandish statements have made it abundantly clear to me that you may know the sterile textbook definitions of the wide range of diagnoses given to persons with disabilities, but you have never had the pleasure of entering into a relationship with someone that is severely disabled. I am absolutely convinced that you have not witnessed the beauty in their eyes as they light up when they see a loved one. You have not heard their laughter or benefitted from their loyalty. You have not observed the determination in their work or the enthusiasm in their experiences. I am surprised, however, that as a person with as much educational background in ethics as you have, that you would not see the critical need to interact personally with a person diagnosed with a severe disability if you are going to make bold assumptions that they are better off dead. I have put together a few bullet points expounding on my claim to your faulty postulation, because it is clear, that you are detached from the reality of the lives that disabled people actually live, and I am deeply concerned that your views are deadly to the disabled population and also destructive to the character of the human race.
-You claim that severely disabled persons have no quality of life. It must not be overlooked that it has been proven throughout history that quality of life for all groups of people is severely compromised when they have been subjected to discrimination and isolation. I would be remiss not to point out that despite the discrimination that persons with disabilities have endured for centuries, their satisfaction in life is extraordinarily stable. Even though they lack the job opportunities afforded to the non-disabled, even though they lack basic social acceptance, even though they face cruel isolation and alienation, it is still found from the Louis Harris poll that between 30 and 40% of individuals with disabilities have stated that they are very satisfied with their lives. I dare say, Mr. Singer, that you would be hard pressed to find any non-disabled person finding more satisfaction than this population despite centuries of isolation, discrimination and abuse. I truly don’t think you have taken a holistic view to the perceived lack of “quality of life” debate. If we look throughout history at the mistreatment of certain groups of people, we can see that the quality of life was severely compromised due to the discriminating stereotypes enforced upon them because of their differences. This predatorial “survival of the fittest” approach to society has proven to be destructive and disastrous. Of course, you of all people are well aware of the harmful nature of this mentality when you saw firsthand as your parents fled Austria during Hitler’s reign and your grandparents were never seen again after being hauled off to a concentration camp. We see now in retrospect that treating people as less deserving because of their differences is not only extremely harmful and morally wrong, but flat out ridiculous.
– It is true, Mr. Professor, that many of my friends that I am fortunate enough to work alongside will never have the capacity to be doctors, lawyers or Princeton professors. I would not deny, that they will never have the ability to solve algorithms, run marathons or eloquently deliver a speech, but you are wrong when you make the assumption that because of these limitations, they are better off dead than alive. In fact, extensive research has shown that the job retention rate is significantly higher for disabled adults than with the non-disabled. Call in rates are lower, work performance is steadier and job enthusiasm is higher. So, although you may not find any adults with disabilities in the medical field, in law school or the NBA, you can encounter them as greeters in a local grocery store, janitors in your public library, caretakers at a farm, bus boys/girls at a restaurant, gardeners at a greenhouse and so much more. Thus, your assumption that these people have no value has a faulty premise, and just because they might not become lawyers, doctors or engineers, does not mean that they should not have the right to live or receive medical care. Furthermore, I would expect you to know that, like disabled adults, a very low percentage of non-disabled adults are categorized in the upper class of society either. In fact, the majority of our great nation is made up of local cooks, farmers, janitors, grocery baggers and restaurant workers, and I am proud to say that this is where the heartbeat of our nation lies. Additionally, I would propose that the soaring unemployment rate for adults with disabilities, where less than 5% of adults with developmental disabilities are successfully integrated into the workforce, is not based on an inability or lack of motivation to work, but rather a lack of opportunity due to discrimination from employers.
-Furthermore, your claim that private and public healthcare providers should deny care to severely disabled infants is a violation of the constitution of America. Denying care to living breathing human beings is an assault on the very constitutional rights that all men are created equal and are endowed by their creator with certain unalienable rights that among these are Life, Liberty and the Pursuit of Happiness. I want to make sure you caught that constitutional right, “LIFE”, and denying these babies the right to life, is a breach in the constitution, and I believe that any social acceptance of your argument will tear the fabric of our country into shreds.
– Most importantly, although you claimed that “By 2040, it may be that only a rump of hard-core, know nothing religious fundamentalists will defend the view that every human life, from conception to death, is sacrosanct”, I am proud to admit to you that I am a disciple of Jesus Christ, and I think you underestimated the amount of Christians willing to defend all human life, including the lives of those who are severely disabled. Yes, we are honored to say that we believe that all humans were created in the image of God and should be treated with utmost value. Although, we are aware that being a professing Christian in academia is not a widely popular stance, we will gladly inform you that we would rather offend you or anyone else in academia than offend the God of the universe. As a Christian, I believe that every person, disabled or not, was created intentionally and with a purpose and the act of destroying human life is a desecration of the Imago Dei.
– In closing, Professor, I would like to invite you….Actually, I would go so far as to dare you to make the trip to Metro Detroit and pay us a visit. I am confident that your view point would be radically changed if you did. If you decide to come, fear not, for although your viewpoints threaten the very existence of my disabled friends here on earth, I am certain that they would still welcome you with a warm and genuine smile and maybe even a hug. I would not deny that you are a highly educated and connected man with a long list of celebrated accomplishments, but regarding your wrongful assumptions that the severely disabled person has a terrible quality of life, I have one thing that you clearly do not have, and it is something much more powerful than education, for it is the privilege of knowing people with severe disabilities. I have deep and meaningful relationships with many adults that have profound disabilities which affect their ability to walk, talk and use their hands. Through those relationships, I clearly see joy, contentment, motivation and the ability to interact with others in deep and meaningful ways. You see, I can testify from my extensive experience, that the innocent goodness in people with disabilities is absolutely breathtaking. Their friendship has made me a better wife, mother, friend and worker. I would even venture to say that my friends with disabilities have contributed more good to this world than I ever could. As I previously mentioned, I would agree that you are a highly educated man, but neither your education, title nor your career gives you the authority nor the ability to predict the future of severely disabled infants or to make claims on what kinds of rehabilitative steps that will be made, because no human is created exactly the same. Furthermore, the body is capable of remarkable things and to make a blanket assumption that is not grounded in any fact, that infants born with severe disabilities will never improve, gain greater awareness or have quality of life is gravely mistaken. Lastly, it is impossible to make assumptions on the happiness or satisfaction of life for individuals that you have never even met! The only person with the ability to make claims on quality of life, is the person themselves or those closest to them. This is precisely why I invite you to Dutton Farm so that you can ask them for yourself!
I am an incredibly restless person. I wake up on overdrive. I am very sure that I can be annoying. It is safe to say that peace is not a fruit of the spirit that is well developed in my life. Just sayin. However, these past few months I have been craving, yearning and pining for peace. Peace of mind, peace and quiet, peaceful rest. Just peace. I open up the source of life giving peace. I thumb through the pages. Searching for that word. Peace. How do I get it? How can I keep it? As I read, I continue to find that peace is not something you find. It is a gift. A gift from the ultimate gift giver. “My peace I give to you”. “I do not give peace as the world gives.” “The Lord turn His face to you and give you peace.” Peace comes with that whisper of love from our humble Jesus that ever so gently eases the chokehold of anxiety and lifts the weight of debilitating guilt. You let the words of Jesus crack open and seep through that cement wall of worry and feel peace soak your parched spirit.
I look at the world. I see that peace is scarce. I see that there are many peace posers. The world promises peace by following your heart, finding the right diet, making this amount of money, buying more, avoiding difficulty, traveling here, adding this or cutting out that. Peace posers.
The only way you can find true peace is to be where Jesus is because He is the original and true peace giver. The most peaceful people I know are the ones who intimately know Jesus. Whether its someone whose plate is unbelievably full and have never ending to do lists or someone who simply has the task of just being. The circumstance of our life isn’t what brings peace. Its not what we do or don’t do. Its what we are given through surrender.
The savior gives peace that is beyond our understanding. Have you ever watched someone’s life unravel or take a turn for the worst and you wonder how in the world do they have such peace? Because surrendering your will to the will of Jesus is the game changer. His peace has no red tape. His peace has an all access pass to our lives no matter the circumstance. Peace is found in broken situations only because He is there. The man of sorrows. He can always be found among the least. Among the needy. Among the broken.
In my life, you won’t find much worldly peace. But there is a peace that passes all understanding. A peace that calms the storm. A peace that brings relief to anxiety. It isn’t gained by cutting things out or adding new things in, but by surrendering my pride and inviting Jesus into my mess so the world can see.