Blog Bonus: When a Person with a Disability Dies

Hello readers,

I debated using this as a bonus because I like my bonuses to be happy topics. However, should I wait much longer it may not be a fresh topic, so here we go.

About a week ago, a sixteen-year-old member of my church died. Her name was Lyric, and she had severe disabilities, physical and cognitive. She died because of medical complications related to those disabilities. This happens sometimes because the manifestations of certain disabilities can affect the immune system and organs. However, I’m not as concerned with the reason as the fact that Lyric died. I ask myself, what do you do or say when that happens?

You all know how I feel about books and movies killing off characters with disabilities just to further an agenda. You also know how I feel about doctors, therapists, and other experts encouraging loved ones to treat PWDs as if their lives are not worth much–as if they are already dead. But when the death is not connected to any of that–when God, or the universe, or whatever you want to say, chooses to take a person with a disability–what’s the best reaction? Moreover, how do we respond to God, or the universe, or whatever?

I can tell you, there has always been and probably always will be a part of me that questions God when it comes to people like Lyric and how they lived. When I heard she died, my first thought was, “God, why? She could’ve had a long life, a good life. She could’ve overcome, proven that PWDs are not put on earth just to inspire and then expire. What was going on?”

I’m not going to try to spiritualize this, out of respect for those who don’t believe as I do. I’m also not going to spend time on how we shouldn’t react when a PWD dies, because  I think we know that. Instead, I’m simply going to suggest a few things we should do, say, and remember.

  • Remember that, if they were loved (and many are) every PWD had a good life, no matter how long it was and no matter what they were or were not able to do or be in that time span.
  • Remember that although experts can speculate about how long a PWD will live (they call it Disability-Adjusted Life Years), no human ever makes that decision (unless suicide is involved and I’m not even going there).
  • Remember that all people have the power to inspire. A PWD’s purpose is not simply to inspire and expire.
  • Some people believe persons with disabilities are on earth only to “teach us how to love.” In doing so, they reduce love–the love of God and the love of people–to a namby-pamby, feel-good, sugar-spun and fragile thing, delivered by the world’s precious wounded lambs. That is not what love is. Love is a powerful, earth-shaking, life-changing and life-giving thing. I don’t know if PWDs like Lyric have more love than the rest of us, but if they do, so what? We should be praising them, and praising _____ (fill in your blank here; mine is God) for that power. Remember to give PWDs all the credit they deserve because they earned it. No, no–they were worthy of it just by being human beings, like we all are.
  • Instead of, “I’m so sorry”, meaning, “I’m sorry your loved one’s life wasn’t more,” say, “I’m sorry. What can I do to help you?”
  • Say, “He/she was a strong, compassionate, beautiful person who had a unique way of reaching the world.” Focus on positive, funny, touching, and personal memories.
  • Offer true comfort to the family and friends. This can be physical–as in, bringing by food, showing up for the funeral, donating something in the deceased name–or emotional/spiritual. Do not fall back on pat answers such as, “This was God’s will” or “God took His special angel home.” The intentions behind these are good but the message may fall flat.
  • Focus on a good life lived, not the disability or complications died from.


Let’s give persons with disabilities a dignified, loving life from beginning to end.


Is There Life After 21? There Should Be!

Hi readers,

If you’ve read my “About Me” page, you know I’m a bit of a country music fan (and if you haven’t, well, you know now). A lot of this genre, I don’t like, but there are some artists I enjoy listening to, including Reba McEntire. My grandma listened to her, and so I was exposed to Reba early as a little kid. I also love the fact that she’s a redhead. Anyway, one of her hit songs is “Is There Life Out There,” circa 1993. And it occurs to me, this is a question a lot of adults with disabilities are asking.

No, this is not another post about why PWDs don’t have the same quality of life as the temporarily able-bodied community. This post looks at one of the reasons why they have to struggle for that quality of life. The fact is, many “disability service” agencies buy into the idea that there is not life after age 21.

Think about it. Under the Individuals with Disabilities Education Act (IDEA), students with disabilities are entitled to receive a free, appropriate public education in the least restrictive environment possible–until age 22, when they “age out” of the system. Leaving aside the fact that many schools and systems routinely break this law, the age limit means that high school is often the beginning of the end for students with disabilities. At that point, they enter a type of limbo that involves waiting, and waiting, and waiting for more services.

Of course, some of these services are beneficial to some of the population in the disability community. The problem is, not every service is beneficial to everybody, and service options depend heavily on where you live and what agencies are willing to do. According to Disability Scoop writer Kate Giammarise, many PWDs and their families wait years for services. They are placed on lists “5000 people deep,” and the only way a slot opens up on one of those lists is if someone else moves out of state or dies. I mean, really. Imagine being the parent, guardian, friend, or loved one of a PWD, and knowing someone else’s death is the only way your loved one will get what he or she needs. This is so wrong on so many levels.

Additionally, the disability community is noticing–and I agree–that there seems to be an overarching attitude that disability is something you “grow out of.” In other words, when teachers, social workers, and other service providers encounter a child with a disability they are often eager to serve that child. Why? Well, partly because laws geared toward serving children are in place, but also because those children are seen as cute, endearing, and full of potential. Yet, what happens when those same kids grow up? Right. Suddenly they aren’t endearing anymore. They aren’t cute, and for the most part, people give up on their potential. The attitude is, “Well, we spent 18 years on therapy and IEP goals and working toward independence, but the kid just couldn’t hack it, so we’re done.”

Of course, service providers don’t have to be that snarky and obvious about it. Most of the time they’re not. Instead, the attitude becomes, “We’ve done all we know how to; don’t push us anymore.” That’s what I’ve run into every day since I turned 18. My then-Voc Rehab counselor, who didn’t want to be there in the first place, lied to me and my family, saying I did not qualify for services or money if I was going to go to college. In truth, I did qualify to have college completely paid for because of my parents’ income and because college is seen as an avenue for adults with disabilities to eventually get jobs. Thanks to that counselor’s negligence, I have thousands of dollars in student debt I will never be able to pay because I am not allowed to save significant funds.

Finding services of any kind is in fact a crapshoot when you are high-functioning. For example, I have explained to counselors and county workers that I can’t “just move” and take public transportation in lieu of driving, because public transit usually drops you blocks from your destination. You are reading the blog of a person who cannot physically read a map and has visual issues otherwise. Do you know what it was suggested I do in response to this? Get a guard dog. Not that I’m down on guard dogs, but…seriously.

Of course, services after 21 are difficult to locate no matter your functioning level. In the Disability Scoop article I referenced, Kate Giammarise writes about Abby, a woman in her 20s who has autism and an intellectual disability. She has spent most of her life undergoing 50 hours per week in therapy to learn skills most of us do without thinking. Her mother explains, however, that after Abby turned 22, she lost all her services. As a result, she hasn’t been able to keep practicing her skills effectively. She is no longer toilet-trained, must be fed by hand, and works to hold and use a sippy cup. Now, would Abby suddenly become a master at those skills with continued therapy? Who knows–that isn’t the point. The point is, age should not preclude having what you need.

The double standard continues to mystify me. I mean, what if we did the same thing to temporarily able-bodied people? As in, “Oh, you’re 21? Sorry, you can never access your family’s help with house chores again; I don’t care if your paint peels or your toilet explodes. Oh, you’re 35? What are you still doing socializing with 20-somethings?” Of course, society does tend to send those messages. But I would argue they aren’t as enforced as they are for persons with disabilities.

Sometimes, people try to make up for lack of services with “special rewards” or trips. For example, a few years ago, I heard of people with autism in their 20s being taken to Disney World for a celebration of their lives thus far. There is nothing wrong with that; I would personally enjoy going to Disney (um, in February, wearing an overcoat, on a Tuesday). But the way the story was presented, it sounded like a trip to Disney was supposed to be the best time of these people’s lives. Why? Could it be because there were no services where they lived, so after Disney, they would just go back to waiting? Trips, rewards, temporary services–those are great. The services PWDs receive in childhood and adolescence can be good if provided correctly, with a focus on the whole, individual person. But we can’t stop there, because the fact that you had an IEP at age 13 doesn’t mean jack when you’re 26.

Life after 21 is not the big party everybody thinks it is. Life at any age will never be perfect. The key is, temporarily able-bodied people are expected to experience the best parts of their lives after 21. People with disabilities can too, but only if we make the effort to provide what they need. That starts with listening to them and their families or friends, and supporting them consistently throughout life. That doesn’t make PWDs needy and dependent–it proves they are ready for interdependence. Let’s make life after 21 happen–whether it includes Disney World or not.


No More Surrendered Children

I’m not a procrastinator by nature, yet sometimes I drag my feet about writing a post. Today’s is one such post because it reminds me how far we still must progress in treating persons with disabilities as equals.

This weekend, we will celebrate Father’s Day. Whether you have a father in your life or a father figure, it’s a great time to celebrate family. In fact, with days like Mother’s, Parents’, and Children’s Day, spring and summer in general are times to celebrate family. But not for families like the Butlers of Ironton, Ohio.

The Butlers’ seventeen-year-old son Andrew has autism, and it is a severe form. He cannot read or write. More disturbingly, his autism causes him to behave in ways his parents did not feel they could manage. This happens with many young people who have autism; as they grow up, they become physically stronger than their parents, and without the proper support, their autism takes over.

Because of this, the Butlers chose to place Andrew in a residential facility. You guys know how I feel about those places but I also understand there are few other options in some cases, so I will not question it. What I do question is the fact that the facility is five hours away from the Butlers’ home. Because there are no adequate autism supports in Ironton, the Butlers were forced to surrender their son to state custody.

Let that sink in for a second. Put yourself in this family’s shoes. You have a child with autism or another disability. There are no supports where you live–zip, zero, zilch, nada. And so your only choice is to surrender your child to the state?

What the freaking French is wrong with this picture?

“You don’t see parents surrendering their child because of leukemia,” Mrs. Butler says, before going on to name a few other cases in which children are not surrendered. Even though Andrew seems happy where he is, he is cut off from his family. They cannot text or email because Andrew is illiterate, and a ten-hour round trip means their visits are few and far between.

This is one of those things that makes me angry enough to spit. First of all, I’m going to confront Ironton and towns like it with these questions:

  1. Why did you allow one of your citizens to fall through the cracks for no other reason than a disability?
  2. Why, at 17, is this young man still illiterate? I understand that some forms of disability preclude literacy, but did you actually attempt to educate him or did you just say, “We can’t do this, so why bother trying?” Did you attempt to help him communicate in any way? What hope, if any, did you give his parents, or did you just say, “Well, your kid’s autistic so don’t expect much?”
  3. As Dr. Phil would put it, under what theory is it okay for loving parents to have to give up their child and many of their rights in order to get him the help he needs? You should all be ashamed of yourselves.

Of course, for every Ironton, there are places that are doing better, but we are far from “there yet.” As long as one child, teen, or young adult is ripped from family and friends because of disability, we have not done our job. I understand, more than most I think, that disability can be tough. Mild as my form is, I endeavor to understand how severity can impact people. But I am sick of seeing disability tear families apart, forcing them to make sadistic choices.

No more surrendered children. Let’s do our part to get them home, wherever that may be.


Inside Out and Back: Allowing PWDs to Express Everything They Feel

Happy June, readers!

As you might be aware, this month marks the one-year anniversary of Disney-Pixar’s Inside Out. When I saw the trailer last year, it inspired me to imagine what my own emotions might look like and to share those imaginings with friends. Today I want to share them with you as part of a post I hope will be more lighthearted than the last few.

Joy: My Joy is a tiny little pixie of a thing, because good things come in small packages. She wears a multi-colored jewel tone dress, with a particular emphasis on emerald, since that’s my favorite stone. She has chocolate-colored upswept hair which usually holds a pencil, since writing makes me happy. She can often be seen reading/carrying a book, and speaks with an Irish accent since Ireland makes me happy. She sings often and wears little gold glasses.

Sadness: Sadness wears a dark denim skirt, argyle tights patterned in amethyst and sapphire, and a purple ladies’ necktie. She also wears a gray sweater covered in clear crystals. If I’m crying happy tears, the crystals light up; if my tears are sad, they fade out. Sadness wears big clunky shoes and long white opera gloves, which makes it hard for her to use her feet and hands. This represents my cerebral palsy because, as much as I try to have peace with it, it sometimes makes me sad. Sadness also wears glasses, but they’re bigger than Joy’s; more a dark, round librarian style. She sighs a lot, is dreamy and mopey, and likes to be by herself. She doesn’t have an accent but does use a whispery voice.

Fear: Fear is a proper, uptight lady who runs a tight ship. She’s dedicated to keeping everybody safe and under control. She’s seen what can happen when the other emotions lose it, and it isn’t pretty. She speaks with an RP British accent, keeps her blonde hair in a bun, and dresses in military dress greens or blues with highly polished brass buttons. Fear also drinks a lot of cocoa and iced frappe drinks. If something is truly scary, she gets a big caffeine jolt and it’s, MAYDAY, MAYDAY! Otherwise, she’s just slightly jittery.

Anger: Anger is a bit of a cross between Southern belle and spunky cowgirl. She wears a straight, dark-wash denim skirt and a white top patterned with red, gold, and silver sequins. As befits her motif, she has red hair in a big poufy style (think Reba McEntire, the early years). She usually stays quiet because she knows that, bless their cotton socks, people just can’t handle her at full volume. However, when she does get mad, it’s ugly. She will rip her scarlet nails into you until you howl like a wounded dog. She has snakeskin boots and a red cowgirl hat she wears just for those occasions, and naturally, she uses a Texas drawl. She also wears fire-red lipstick.

Disgust: Disgust is kind of my snarky one-liner side. She wears a white dress covered with polka dots in bubblegum pink, lemon yellow, creamsicle orange, and lime green, as well as a bubblegum pillbox hat. That hat goes over well-coiffed hair in a black pageboy, flipped up at the ends. Her shoes and lipstick always match–bubblegum pink. Disgust speaks in a New York accent, because after all, who knows sophistication and taste better than a New Yorker? As the only true “Yankee” on board, she’s also not above telling the other emotions to get real now and then.


So, why did I tell you all this and what does it have to do with PWDs? Well, recently I got to thinking about PWDs’ emotions and how much they are controlled. I mean, what do we do when a PWD’s Anger comes out? Yes–we squelch it. We say it’s a symptom of “noncompliance.” Sadness is also “noncompliance,” or not worth dealing with. A PWD’s Joy is often squelched as well. As a matter of fact, I think we spend a lot of time telling PWDs, consciously or not, that it’s not okay to feel anything.

Sometimes though, we take the opposite tack. That is, we get too hung up on how PWDs feel, and why. For example, let’s say little Riley has a disability (see what I did there)? Her preschool teachers are always quick to tell Mom and Dad that “Riley had a bad day” because some snot-nosed classmate took her toy, or because she didn’t want to do therapy. As Regina of Once Upon a Time said in the recent fifth season, “Oh, I get it. When you get upset, everybody rushes to help. But when I get upset, I get a time-out!”

What’s up with that? Or as Emma Swan would say, really? Since when did emotions, healthfully expressed, become a license to say, “You can’t participate/you must be monitored/your every action must be reported”?

I’ve got a better idea. Instead of monitoring PWDs, instead of telling them how to feel, let’s just accept how they’re feeling and teach them how to express that. Let’s start saying, “It’s okay to have a great day. It’s okay to have a terrible, horrible day. And you know what? it’s okay if your day was just ‘normal.’ We feel what we feel.”

In addition to that, let’s respond better to those feelings. Let’s give PWDs safe places and ways to get angry. You say, “Well, I can’t let Luke punch the wall and curse in my classroom.” Fine–where can he do it? Let’s learn what gives them joy, and stop using those things as incentives on behavior plans. In other words, let Grace collect stuffed cats, or read books, or swing on the swings at recess, because she wants to, not because she earned it. When they’re sad, let’s hold them and say, “Why are you sad, Michael? What can I do to help?” Let’s say, “It’s okay that you’re upset. Take some time, cool off, and come back when you’re ready.”

A lot of people, whether or not they have disabilities, distrust emotions. Emotions should not rule us, but they are important. They are in fact vital. God gave them to us, in my view, partly because He Himself is emotional, too. Let’s celebrate them, and give them a positive place in the narrative of persons with disabilities–and in the narrative of all people.

Bonus Exercise: Get creative. If you like, sit down and sketch/write descriptions of what your own emotions look like. They can be male, female, both genders, human, animal, alien, whatever. Go nuts, and have fun!