Stevie Wonder Just Won the Grammys With His Powerful Statement About Accessibility

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He technically didn’t win an award, but Stevie Wonder won the Grammys for us.

After a sweet tribute performance to the late Maurice White with a capella group Pentatonix, Wonder made a powerful statement before presenting the Song of the Year award:

“We need to make every single thing accessible to every person with a disability,” Wonder said.

 

 

We couldn’t agree more.

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Dear Future Girlfriend, From a Man Who’s Still Learning to Love Himself

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Dear Future Longterm Girlfriend,

Maybe we’ve met. Maybe we’ve not. Frankly, I have no idea. Maybe you’ve been waiting around for me for a long time, even a few decades. Maybe you’ve been waiting while I assumed you wanted me to be something I feel I’m not: “normal.”

My pronounced speech impediment and coordination issues didn’t seem to qualify as “normal.” I assumed you would judge a book by its cover. I figured I knew so much about you. They say lovers can be so close they can almost read each other’s minds. But I doubt this is the type of mind-reading they were talking about.

Maybe all you’ve ever wanted was closeness, freedom to be you and freedom to love me, book cover and all. Know I always loved you, your beauty, your depth, your wits, your smarts, your sense of adventure. But I never gave you a chance to reciprocate and love me fully. I was so scared of you loving me as I was, because that would shine a strobe light on my core failure in life: my failure to love me.

What do you say we start over? (Which is kind of strange to say because we may not have even met yet.) By start over, I mean start with loving ourselves deeply.

Then from there, let’s simply allow ourselves to be loved by each other. Of course, we will most likely add in lots of laughter, kissing, cuddling, romantic walks, yoga, cooking together, and love-making.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When I Met the Special Needs Parent I May Be in 15 Years

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Why is there that space between my driver’s seat and the center console, juuuust wide enough for things like my wallet and phone to slip through and fall onto the floor, but not wide enough for my hand to retrieve those things?

Why are there still people who don’t have EZ-Pass or Fast Lane, or whatever sort of electronic toll-paying box you can have on your windshield, for faster travel?

Why do cars in Massachusetts come equipped with turn signals?

Ah, the mysteries of life

I’m talking about my car and these mysteries for a reason. We just took our children Tess and Dana on the road, to see some drummers.

It’s dawn, on the day we’re supposed to leave. Our friend Nicole is picking up Dana to bring him to and from his soccer game. She’s the mom of Alex, Dana’s best friend. She is taking Dana to and from because she rocks. Also because it gives us a chance to pack the car and prepare Tess for the trip. This is key. NASA has less to do when they prep for a launch.

As I open the door and head out to Nicole’s car, I’m filled with dread as soon as I take my first step outside. The ground is pure ice. There’s a thin layer of snow on the walkway, and everything is iced over. I can barely walk because of how slippery it is. Falling from the sky is a punishing blend of snow and sleet and ice pellets, what they call “wintry mix,” in forecasts. I sigh. This means our drive time will be much longer than the two hours we’ve planned.

We have to bring Tess’s bed with us. It’s a solid metal frame of pipes and a super-strength tent that zips closed from the outside. It’s called Abram’s Bed, and it makes trips like this possible. We love it. Taking it down and putting it up takes time. Its pipes fit together with a little button that you push in and it snaps back open over a hole on another pipe, but not without pinching my finger and taking a little skin with it; the entire process makes me drop the F-bomb, like, 400 times. I’ve discovered the best way to deal with the bed, apart from my wife doing it (since she’s much better and more patient.) The best way is to make a game out of it. To set a timer and race the clock to build or unbuild the thing. To set new records and then try to beat those records. I would tell you I don’t talk to the bed and taunt it after I build it or take it apart in record time, but that would be a lie.

At last the packing is done. As we pull out of our driveway, spirits are high. My wife makes a joke that never fails to make us both laugh, about how we acted before we had Tess, how we had these quote unquote complaints about Dana, our 9-year-old, Tess’s older brother. “Dana is too advanced. He’s 11 months old and is talking too much.” “He’s not fluent in Spanish yet, even though our nanny is supposed to be speaking to him only in Spanish.” We were such a-holes.

We are on I-95 heading south. The snowflakes begin for real. In the lane next to us is a Fiat, and I believe the flakes are actually larger than that car. It’s slow going. Tess begins a relentless sonic assault. It’s a wintry mix of her own, a cross between whining and yelling that lets us know she’d prefer not to be in the carseat any longer, that she’d rather be in school. We have traveled approximately 10 miles from home so far.

Dana can’t hear us from the backseat, so conversation is pretty much impossible. I swore I’d never be that parent who regularly plugs in their kid, but plug him in we do, with an iPad and fat headphones that block out the yelling.

We’re heading for Boston, about two hours south of us. We’re doing this because my wife has had an excellent idea. It’s part of our new campaign to focus more on experiences than things. She’s arranged for our family to meet her sister’s family, so Dana can meet up with his cousins, two boys around his age who he loves dearly. Together the two families will use credit card points for a free stay in a hotel with a pool. We will hang out for the whole weekend. And we will all, Tess included, go see drummers together.

Luckily the snow lets up, about five minutes from our final destination. The journey has taken not two hours, but closer to three. Dana is itching to see his cousins. We’ve already fed Tess her lunch. I am insanely grouchy because I haven’t eaten enough.

We meet up with Kate’s sister Martha and her husband Chris. He is 10 years older than I am and is the closest person I have to an older brother. They follow this show and call a lot, so they know all about our lives. They take Tess from our arms and walk her around, away from us. They give us a much-needed break to satisfy our own needs — to get food and coffee and reset ourselves, to shake off the car trip. They are awesome in so many ways.

Then it’s time for the show. We head into a dark theater. My wife, wise beyond her years, has managed to snag the seats in the balcony, so we’re close to the action but have numerous release valves — empty seats, exit doors and an open aisle behind us for walking or dancing, in case Tess melts down.

The lights go down, and three men take the stage. They are pounding on drum, covered with day-glo liquid paint. They are staring straight ahead. They are blue. We are watching the Blue Man Group.

Tess responds to music like you wouldn’t believe. Anything with a bass line, with serious percussion, with a beat you can feel. And so we theorize that she’ll dig the Blue Man Group. For those of you who’ve never been, it’s an audio and visual paradise, with driving beats and lights. If you’ve ever seen a bunch of dudes busking in the street, banging out hardcore rhythms on buckets with two-by-fours, it’s like that, only with crazy lights and colors, actors who do little pieces, who are masters of comic timing, and a really good rock band behind them.

Tess likes it. She can feel the beats, for sure. But it’s overwhelming, too. The sheer force of the drums, the volume of it all, is more than she can handle. We take turns holding her and bringing her up to dance in the empty aisle. More than once, she burrows into my neck, trying to hide from it all.

The boys love it. We emerge from the theater, all laughing, all saying, “Did you see that part when…”

That night after her dinner Tess goes down early, like a sack of hammers, depleted by such a big day, no doubt. Chris and I make a run for beer and wine. The adults stay up and talk for hours, while the boys in the next room close the door and watch a movie and probably jump on beds.

Then Tess is bleating in the dark. It’s 3:30 a.m. I give her her pacifier, but it’s no good. She’s up, and so are we. We thank our lucky stars it’s a suite, so at least we can get her out into the living room and let Dana sleep. We sit her down and prepare to give her some food. And suddenly she is looking at the two of us and grinning. The smile is one of the largest I’ve seen on her, a toothy one, a smile of pure joy and delight. In spite of our fatigue, we chuckle at our girl, and all is forgiven.

The next day is relaxing. We swim and hang out and do our best not to do anything else. We’ve learned on these sorts of trips, less is more. We’ve purposely left Boston and stayed outside of the city, so it’ll be not just cheaper but also quieter and easier.

Then, it’s time. I leave my family at the pool and run upstairs to the room to get something. The elevator stops, one floor up. The doors open and I hear a voice.

“Come on, Sara,” the voice says. It’s a woman, probably older, judging by the sound. It’s like the way you’d speak to a small child, but there’s something else underneath that. There’s a quality in the voice that, for some reason, tells me for certain she’s speaking to an adult. I can’t for the life of me figure out how I know this, but I do. I know before I see Sara or the woman that Sara needs help getting onto the elevator.

I’m right. Sara steps inside. She’s in her 20s. She is so much like Tess it’s spooky. Her eyes are wide, seeing but also unseeing in a fundamental way. Her movements are jerky, her walk labored. She comes to a stop in the center of the elevator, not because I’m there and she knows about social cues and giving people space, but because she seems to have learned over time about how to walk and how to stop and when. She does not make eye contact with me at all.

Her mother follows her into the elevator, murmuring to her in soothing tones. The mother is in her mid- to late 50s. I see it in an instant–the unmistakable face of the special needs parent: her expression beleaguered but somehow still bright, the circles under the eyes, the forehead’s worry lines worn into permanent creases, the hair rife with early grays, slightly askew, probably hastily brushed, if at all. And above all in her I see the silent determination, the grit you gotta have, to go on the road with your kid, to endure that physical and mental toll of being in a hotel away from home. Away from everything that’s easy, everything that works and is safe, every procedure and safeguard you’ve spent years creating in your house, to keep your kid happy and protected.

I smile at Sara and her mother. They act as if I’m not even there.

The elevator lurches, and we plummet upward. It’s a glass elevator, so as we ascend the floor falls away, and you can see hundreds of feet straight down into the bar and the lobby, but the young woman doesn’t turn to look.

Her eyes stay frozen in place, wide. It’s clear our speed unnerves her. She tenses, as if she’s been hit. Her mother is there, at her shoulder, talking in low tones into her ear. “It’s all right, Sara,” she’s saying.  Sara’s expression doesn’t change.

Tess isn’t with me. She’s down at the pool with my wife. I wish Sara and her mother could meet Tess.

I want to reassure Sara. I want to say hello to her mother and tell her she’s doing a good job. I want to make this elevator ride work for them, make it less stressful, less of something to endure. Maybe even make it something enjoyable, a novelty, make it so Sara understands what a wonder it is to be in this machine that has a glass wall, so you can see how high up you are and what that means.

I want to reassure Sara’s mother too, to shout: “I am you. I am you from 15 years ago!”

Instead I say something trivial like, “Quite a ride, isn’t it?”

Sara doesn’t hear me or doesn’t seem to. The elevator dings, the doors open, and she and her mother exit.

The hotel is full of people. It’s the NFL playoffs, so there’s people in Patriots jerseys. Families in swimsuits on their way to the pool. Couples in winter coats, stomping snow off their boots as they enter the lobby. Clusters of professionals, clutching folders, en route to conferences in the banquet rooms. I don’t see Sara or her mother again. But I’m haunted by them for the rest of that day. I’m haunted by them still. I can’t help but feel like in that elevator, between floors 3 and 5 of the Embassy Suites in Waltham, Massachusetts, I’ve caught a glimpse of the future Tess. And the future me and my wife. We are on a trip. We’re hours from home. Perhaps in our hotel room upstairs on five, there’s a new version of Abram’s Bed, a bigger one with more reinforcements, to keep our Tess safe. The fridge in there is stocked with days of Tess-friendly food, in tidy containers we’ve brought on ice from home. Tess’s hair is long, pulled back in a short ponytail, so she can’t pull it or eat it. She is safe and warm and not unhappy. We are with her.

She is riding an elevator of glass, hundreds of feet above everything.

tess and dad smiling

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Why Families of Medically Complex Children Sometimes Want to Avoid the Hospital

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Many people see medicine as black and white. You are sick or injured, you see a doctor, it’s fixed. The truth is that medicine can be gray. Sometimes families of children with complex needs might say that they want to avoid the hospital if at all possible, and that can be confusing to family and friends who aren’t in our shoes. Everyone is aware of the risk of germs and infection associated with hospitals, but there are more reasons why that might be.

For example, there is a standard of care (SOC) that is in place at all hospitals. This standard is designed around the majority of patients. Complex patients are considered more rare, so the SOC is not necessarily designed with them in mind. Often times, as a parent of a complex child, we feel very stuck. The medical team comes in and suggests the SOC, and we know from experience that our child will not respond well. In some cases the team knows our child and listens/agrees, but other times they might see our resistance to treatment as bad parenting.

Complex patients have a lot of medical needs. This may be scheduled medications, breathing treatments, therapies, equipment, etc. When we are at home, everything is laid out in a way that these needs are met, and everything needed is readily available. When you go into the hospital, you can’t take everything with you. The hospital manages all of the medications. There is a nurse assigned to each patient, and depending on the needs of the patients, the nurse may have one patient at a time or more. The hospital equipment being used may not work exactly as your own equipment works. Diaper sizes are not all available. The brand of formula may not be available. It doesn’t seem like a big deal, but when all of these add up, it becomes a big deal for complex patients.

The author's daughter next to a stuffed pink unicorn
Marty’s daughter Casey

Complex patients typically have some sort of home health in place. For us, we had a team of nurses that helped with our daughter Casey’s care. These nurses train on Casey’s specific needs – this training took weeks before we got a level of comfort with them managing Casey’s needs. Someone had to be by Casey’s side 24/7 to manage her complex airway, watch for seizures, manage meds, etc. When you check into a hospital, the hospital nurses can’t be at someone’s side the entire time. It also takes a lot to learn Casey’s airway needs and positioning. Casey required suctioning, diapers, etc all through the night. I stay up, next to her bed, all night long to provide whatever she may need. It can be exhausting for the caregivers to be in the hospital setting without the help and staff we rely on at home. Sometimes patients don’t sleep that well either because of people coming in and out of the room.

But sometimes even the most complex families that have everything set up at home will still need to seek additional medical care. If you have talked with your care team and exhausted all of your home options, here are a few tips to make hospital trips a little easier:

Call ahead: When you child is having a lot of health issues, you should contact their care team regardless of how/where they are being treated. The care team needs to know what is going on for when they may need to step in. In cases where you have done all you can at home and need to take your child to the hospital, ER or clinic, the care team should not be surprised. The decision to go to get additional medical care was probably a joint decision between you and the care team. If they know what is going on, they can coordinate with the hospital, ER or clinic to have the staff ready and waiting for you and your complex child. You will likely be able to avoid the waiting room, and sometimes you can avoid the ER all together.

Set a plan: After speaking with the doctor in charge of your child’s care, come up with a discharge plan together. Discuss previous baselines, make sure they know what you can and cannot handle at home, and if home health is involved in your discharge plan, be sure to keep them in the loop as well. If everyone knows what needs to be accomplished during the visit/stay, it helps to keep things productive and everyone on the same page.

Plan to stay: It’s fine to hope to get in and out quickly, but be prepared for the long haul. As soon as you know you are heading to the hospital or ER, start packing. Pack comfort items for your child. Pack clothes and necessities for you and your child. Pack any special diapers, formula, medications, etc. that the hospital does not have. Be sure to take complete records with you as well; you will need your doctors and their contact info, medication details, major medical history, and it’s nice if you can have baselines and home equipment/staff listed out as well. Casey’s Circle has a great tool that lists all of this information out, and then you simply print out a copy and keep it on hand for cases like this.

Ask for help: Asking for help is not always easy, however, when you’re in the hospital, you may need some help. It’s OK to ask. Some people will be happy to bring food, coffee, magazines or come visit and distract you and your child. Some may be happy to help with other children, stuff you can’t get to at home, etc. People always ask, “What can I do to help?” Let them; they will feel better and so will you. Having a friendly face come by with a cup of coffee and to chat can go a long way at times like this.

Top image via Thinkstock Images

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6 Things People With Chronic Illness Share With Each Other

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For those of us with a rare disease or other chronic illness, it doesn’t take much to relate to one another, regardless of the diagnosis. Our commonalities can create an instant bond, an instant understanding of another’s life with chronic illness. We don’t need the same diagnosis or even the same symptoms or experiences. I believe we experience enough and know enough to have an idea of what life is like with that condition.

1. We share a medical life: It’s not uncommon for us to share many of the same symptoms across conditions. We often simply feel sick — that blah, icky feeling
that leaves you drained of energy and good health. We tend to have susceptibility to common ailments such as a cold or the flu. Fighting for our immunity is a known battleground for our health. We likely experience some type of chronic pain. And within subgroups of conditions, we share even more common ailments. We have additional uncommon symptoms, but we have a primary source of shared symptoms with different causes. But no matter what, we can relate.

2. We share the balancing act between medical life and daily life: Our days are occupied with  an abundance of medications, medical appointments and more frequent hospitalizations than those of the average healthy person. We know the burden of medical expenses and the absorbent amount of time required for managing our health. We relate to the frustration and demands of balancing medical obligations and our everyday lives. We understand choosing between one activity over another because our bodies may not let us complete both.

3. We share the struggle of disclosure: Disclosure can be a tricky subject. Knowing what and when to share with the various individuals in our lives isn’t always easy. What and when do we share information with potential and present employers, potential romantic partners, friends and family? It can be difficult to know the right timing and amount to share our inner most health secrets. We share the same worries and concerns about if our disclosure will be met with understanding and acceptance or rejection and ridicule.

4. We share important life lessons and virtues: We know what it means to persevere, to have inner strength and determination. We’ve learned what it takes to survive on a daily basis. It takes real strength not to give up, to keep chasing our dreams and to make the most out of life. It’s hard business keeping up with life when you’re sick, yet we manage to every day.

5. We share a deep appreciation for life and achievements: We’ve learned not to take life for granted. We’ve all lost loved ones, and these losses teach us to cherish every day, especially the good days. And on those good days, we’re extremely proud of our accomplishments. It isn’t always easy to achieve your goals when you’re dealing with a chronic illness. We appreciate how far we’ve come in life in the midst of health issues and make the best out of each day that we can.

6. We share with one another and support one another: No one knows as well as another chronically ill person the difficulty one faces on a daily basis. We share our stories with one another, and we band together in whatever form available to create a strong support network. We honor and respect others for their achievements. We celebrate the victories of others, small or large, and we empathize during the bad days when life can be trying and discouraging.

Follow this journey on Life’s a Polyp.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the Person With an Invisible Illness Who Has 'That Friend'

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That friend. We all want one, but not all of us get one.

They call and ask you if you want to grab lunch over and over, even when you cancel most the time. They ask how you’re doing and really want to know. They invite you and include you as much as they can.

Are they perfect? No, sometimes they get tired of being told “not today” or not being able to hang out with you as much as their other friends. But they still stay around and want to be a good friend.

You can call and ask for help and they don’t judge you or make you feel like you’re wasting your life. So many times I read about the bad side of having a lifelong illness that can take so much from us. But having this friend can change your life — or at least your outlook.

They come in many ways. Sometimes it’s a spouse or nurse or even just someone you’ve met at the store too many times to count. But they are there.

When you’re sick and can’t get better, you treasure any friendship. Your life is controlled by doctors’ visits, pain and just plain being tired. Having someone who isn’t afraid to come over and bring the coffee can be a lifesaver.

Not everyone knows how to be this friend, even when they want to help. To those who are trying and need advice on how to reach a friend, just remember you will have to put in more effort sometimes. But a cup of tea we didn’t have to make or grabbing a gallon of milk when we are too tired to leave the house means more to us than you can ever imagine. It takes so much willpower to confess “we can’t” that many of us with invisible illness stop asking after awhile.

When we thank you, it comes from a deep place in our heart, and when we turn you down, it’s got nothing to do with you. I always worry, when I have to turn down a friend again and again, that they will get tired of hearing no. This happens all too often. We can only give up so much time to spend with others, and it can mean giving up something important. Having someone who doesn’t make you feel bad for missing out on so many things is hard to find.

So take the time to hug “that friend” and tell them thanks for not leaving nasty notes on our cars or putting us down because we can’t do what others think we should. They are few and far between, and they don’t often get told how much they mean to us.

Man and woman wearing sunglasses in a car

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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We face disability, disease and mental illness together.