New wheelchair fitness features in Apple watchOS 3.0.

Apple Watch to Offer First Wheelchair Fitness Tracking Feature

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For athletes who use a wheelchair, and everyday wheelchair users looking to track their exercise and calories burned, Apple has good news for you. Apple Watch will include manual wheelchair fitness tracking in its free watchOS 3.0 update, to be released later this year.

Apple made the announcement at their annual WWDC (Worldwide Developer Conference) on June 13, 2016. In watchOS 3, the Activity app will offer a setting for wheelchair users. Wheelchair pushes contribute to all-day calorie goals, the “time to stand” reminder becomes “time to roll,” and dedicated wheelchair-specific workouts are available.

With this update, Apple Watch will become the first fitness tracking device for wheelchair users. “We want to make products that serve every walk of life,” Apple’s chief operating officer, Jeff Williams, said in an interview. “We realized that while it was great for messages on the wrist, we wanted to offer [people with disabilities] the same opportunity to get healthier using Apple Watch.”

Apple had to create new formulas for calculating activity and calories burned, because past scientific studies had never looked at wheelchair users. They had to calculate the effect of different seat and wheel heights, surfaces that are easier or harder to push a wheelchair on such as wood floors or carpet, and changes in energy expended when wheeling up or down hills. The user’s specific disability can also affect the calculations.

“The more you look into it, the harder and more challenging you realize it was,” said Ron Huang, Apple’s director of software engineering for location and motion technologies.

To collect data and test the new app, Apple partnered with two groups that promote physical fitness for people with disabilities, the Lakeshore Foundation of Birmingham, Alabama, and the Challenged Athletes Foundation of San Diego, California. About 300 people in wheelchairs participated in more than 3,000 hours of activity research for the project.

The Apple Watch already has other accessibility features, such as larger watch faces for people with low vision and a mono audio mode for those with limited hearing in one ear. The upcoming watchOS 3.0 update will also offer Morse code and other tactile feedback to provide information to people with visual impairments.

Read more about the new Apple Watch accessibility features here.

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The ‘Me Before You’ Issue We’ve Been Afraid to Bring Up

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Like many people with disabilities, I won’t be going to see the film “Me Before You.” I heard about the premise a few months ago and was immediately repulsed. It’s yet another film where actors without disabilities pretend to be us with no understanding of the realities of our lives. Even worse, it’s another in a string of films promoting the damaging idea that it’s better to be dead than disabled. It presents suicide as an acceptable, even noble choice for people with disabilities. I can’t say enough about how harmful that idea is.

I believe the film deserves all the criticism it’s getting and more. But in our rush to condemn it, we must not dismiss the complex issues it presents. We can’t ignore the reality that many people with physical disabilities struggle with depression and suicidal thoughts. It can be difficult for the outspoken, determined disability rights community to acknowledge the ugly, painful side of disability.

We don’t want people to feel depressed about being disabled. But often, they do. And it’s time we talk about it.

When a person is born able-bodied but becomes disabled later in life, it can be a complete shock. Their world is turned upside down, and they might not be able to do some things they used to do. If they have a chronic or rare illness, they may spend a lot of time dealing with doctors and tests just to figure out what’s happening to their body. If their disability isn’t visible, they may face judgment from people who don’t believe them or minimize their symptoms. 

People who acquire disabilities are often thrown in to swim with the sharks of the health care and social welfare system for the first time. They find out those benefits they thought the government handed out like candy are actually really difficult to get. They find out their insurance doesn’t want to pay for the therapy they need or the medication that works best for their condition. They may face discrimination when applying for a job, or struggle to handle the complex maze of paperwork needed to work without losing disability benefits. They deal with issues they never thought about before, like trying to find a bathroom with a big stall or not being able to visit their favorite comedy club because there’s a step at the entrance. They find out they could buy a house for what it costs to get a wheelchair-accessible vehicle with adaptive driving equipment. 

I’ve had cerebral palsy since birth, so I am among the group of people with disabilities who grew up with our conditions. Disability has been part of our identity from the beginning. That does not make us immune from depression. Being born with a disability doesn’t automatically mean we’ve fully accepted ourselves. We have to deal with the same problems surrounding insurance and discrimination and inaccessibility, though to be fair, we’ve had more time to get used to it and develop a thick skin. But it comes at a cost. We often hurt too.

In short, becoming disabled can involve a lot of crap happening to you in a short time. Living with a disability can involve a lot of crap happening to you over a long time. It’s not something anyone would choose. It’s not wrong to feel depressed if you become disabled or have a disability. It’s “normal,” and you have the right to your feelings. But does that mean we should kill ourselves? No! It means we need and deserve support and treatment for our depression, like anyone else.

Part of learning to accept and appreciate our lives with disabilities involves changing how we look at ourselves and our situations. When we have disabilities, we may think there are certain things we can’t do. For example, an athlete who was paralyzed from the waist down in an accident may get depressed because she can’t run marathons anymore. She might not know about wheelchair racing or doubt it can be as much fun. But if she gives it a try, she might love it, or it might lead to a new interest, such as wheelchair basketball or weightlifting. Some disabilities mean we can’t participate in physically demanding activities at all. We can still find lots of things to bring us joy. We just have to be creative and open-minded.

Another common source of depression for people with disabilities, including Will in “Me Before You,” is feeling like a burden. We may need extra help, and we may feel bad about it. But that feeling comes from inside. We may see ourselves as a burden, but that doesn’t mean our loved ones do. To them the extra effort is worth it because we are valuable human beings and we deserve to be loved. 

With that said, if a person is providing constant care for someone with a disability, it can be unhealthy. Everyone needs time to themselves and a chance to pursue their own interests. I’ve often found people with disabilities and their families don’t know about options to prevent all caregiving from falling onto one or two people. Most states have Medicaid waiver programs where a person with a disability can choose their own caregivers, including family, and have those caregivers paid by the state. Waiver programs give tremendous freedom to people with disabilities and our families. I have Medicaid waiver services and am able to live in my own home and go places I need and want to go with the help of people I choose. 

Unfortunately, some states don’t have good waiver programs or have a waiting list. While I strongly advocate moving if it’s necessary to access these life-changing services, that doesn’t solve the larger problem. We need legislation like the Disability Integration Act to ensure home health care access for everyone.

And that brings me to another point. Although the medical aspects of having a disability can be exhausting and painful, many of our most depressing problems are due to prejudice and inequality. We still don’t have full acceptance and equal rights in society, and that’s frustrating. But it’s not our fault. We shouldn’t blame ourselves and turn our anger inward.

If we channel our feelings into action, we begin to realize the problem with our favorite store having a step isn’t our inability to climb that step. It’s the fact that nobody bothered to build a ramp. 

I have been extremely depressed several times in my life, and suicidal on a couple of occasions. Thankfully, I found a wonderful therapist and came out of it a stronger person. Now I live with a low level of chronic depression (plus some PTSD and anxiety), but I function well. I have a job, good friends, I travel and live a fulfilling life. I value my life as much as a person without a disability would. I know dying by suicide wouldn’t be a noble gesture, and it wouldn’t help me or anyone else. It would cause heart-wrenching pain to the people I love. But even more importantly, I wouldn’t want to do it to myself. 

Some people believe suicide should be an acceptable choice for anyone who views their situation as hopeless. Certainly, I believe we should regard people who attempt or die by suicide with compassion. But that doesn’t make it a good decision in the vast majority of circumstances, including and especially when disability is involved.

Disability does not have to be hopeless. Living well with a significant disability is possible. Millions of us do, and with our lives we defy “Me Before You” and its harmful attitudes.

If you have a disability and are struggling with suicidal thoughts, you’re not alone. Many of us have been there. Please seek counseling, and consult a doctor about whether medication might be beneficial. Your life matters. You have value. You can #LiveBoldly. 

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

Follow this journey on Free Wheelin’.

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5 Ways to Support True Independence for Wheelchair Users

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The first day I began using a wheelchair, greetings from both strangers and friends shifted from “How are you?” to “How can I help you?” They started offering help when I was working, eating, shopping, walking my dog, swimming, and going to the restroom. While I’m not asking people to stop offering to help with daily tasks, I believe we should question the reasons why wheelchair users need help, and able-bodied people feel they need to offer help.

I could do many tasks on my own if businesses, housing authorities, and medical systems created spaces with wheelchair users at the forefront of design, rather than as an afterthought. In stark contrast to the stereotype of wheelchair users as pitiful and incapable, my wheelchair means independence and freedom for me. I cannot participate in certain activities without assistance because of poorly designed physical and social spaces, not my wheelchair itself.

Wheelchair users are a heterogeneous group with incredibly diverse experiences, strengths, support needs, and personalities. Please accept this disclaimer: I speak only from my personal experience.

Here are five ways you can support independence and self-determination for wheelchair users:

1. Learn how to answer questions about accessibility. I have to plan every activity of my day around accessibility. I have been in many situations where someone reassured me in advance of accessibility, but I found out upon arrival that I would need to be carried up a flight of stairs, I could only stay in one corner of the room, or I would have to sit two feet below everyone else at the table. Be prepared in advance to answer questions about accessibility by thinking through the process of entering, engaging, and exiting the venue. Keep in mind that what might be accessible for one wheelchair user might not be accessible for another. If possible, give a detailed description of the space, including any steps or curbs, the terrain, the height of tables, width of the aisles, and setup of the restroom. Help by providing informed, thoughtful answers about accessibility.

2. Host events in accessible spaces. When I first started to use mobility devices, I was shocked at how few special events, meetings, and social activities were held in accessible venues. Strangers and acquaintances have offered to carry me and my chair up flights of stairs or give me a piggy back ride over rough terrain. Not only is being carried embarrassing and uncomfortable, it also causes postural changes that make me incredibly ill. Lack of accessible events and gatherings can cause isolation, disenfranchisement, and barriers to employment. Rather than offering to help by carrying me, offer to move an event to an accessible location or encourage the organizers to do so.

Getting ready to go rock climbing.
Getting ready to go rock climbing.

3. Advocate for truly affordable, accessible housing. I currently live in a supposedly wheelchair accessible apartment, the only one in town I could find in my price range when I needed to move. But I still struggle to navigate my own my home. Thick carpets, high counters, and narrow patio doors make moving around my home and caring for my basic needs exhausting. These challenges multiply in the winter when the complex managers take days to shovel, and shovel snow into the ramps when they finally do clear paths. You can help by shoveling your sidewalks properly or encouraging your complex to do so, support affordable housing in your community, and make accessibility changes to the properties you lease.

4. Support access to quality health coverage, care, and medical equipment. Nearly a year passed from the day I scheduled an appointment with my team of specialists about my increasing mobility needs to the day my custom wheelchair was delivered. A year is a very long time to not be able to leave your bed. As such, I used a generic wheelchair that I could barely push a few feet. It caused injuries, muscle and joint pain, and back problems. I needed help throughout the day with tasks that now, with my own chair, I can do independently. Help wheelchair users achieve the highest level of independence they can by advocating for a health care system that allows them to get the care they need in a timely manner.

5. Support disabled individuals in advocating for themselves. I am the expert in my own experiences, body, and needs. I have been managing my diseases for over 15 years and can tell you better than anyone else what I need. Involve me in your conversations about accessibility. When you witness an act of ableism, ask me if/how I would like support. When I decline your offers for assistance, don’t continue to provide that help. Listen.

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The Story Behind This Photo of My Son and a Disneyland Cast Member

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disneyland worker meeting my son in a wheelchair

There’s always a story behind a picture, and this was no exception. We were standing in line at Disneyland when a cast member approached us and knelt in front of our son, Israel. He introduced himself, and after a little back-and-forth banter, I interjected that our son was learning English.

He stood and asked where our son was from, and I explained he was recently adopted from Eastern Europe. He tilted his head and said he wanted to hear the whole story. I kind of laughed and said, Disneyland is not the best place to share such a hard story. But he was insistent, so I told him about our son.

I painted the picture of a child who had spent the first four years of his life in a crib housed in a tiny glass-walled room — a baby at birth sent to an orphanage that placed him in the “Section of the Malformed.” A child who was fed a liquid/puree diet to expedite feeding and never allowed outside because of his deformities. A child who spent the majority of his waking moments sitting in a white, paint chipped crib listening to the same record playing over and over.

My mind skipped back in time to visiting our son and seeing the cribs filled with silent children, seemingly unloved and unwanted. The quiet of an orphanage because children don’t cry if no one responds, the smell of urine and tooth decay, the oppressive heat that seeped to my soul. And when the torrent of my words stopped, I looked up and saw a man with tears in his eyes gazing at my son.

“Thank you,” he said. “I have seen atrocities and hard things. I just returned from Afghanistan where I was serving in the Army, and every day is a struggle for me. I have been really hurting for the last three weeks. But meeting your son and hearing his story gives me hope. If he could survive, so can I.”

I saw the similarities between these two souls. They both had experienced the darkness of life, the cruelties that have no reasoning, human atrocities that can’t be justified, yet they were still surviving. I imagine they both have lived days shadowed by fear and laced with pain, walking a daily high tension line of fight or flight. And neither have shared this pain, only carried the dark quietly.

In that tiny space of time, in the happiest place on Earth, two hurting souls found each other.

A child bearing the scars of a cruel world touching the heart of a man carrying pain, fear and loneliness. The beautiful irony of this was not lost on me. How is it that a child who has been given so little, can pour out so much? A baby who they never taught the simplest concepts, is teaching us. A soldier torn apart from experiencing darkness and burdened by sorrow is providing joy in a Disneyland attraction.  In a brief encounter, they both take a moment to see a future filled with hope because even darkness must pass.

Now that’s a story Disney could appreciate.

“It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. They kept going. Because they were holding on to something.” — J.R.R. Tolkien

my son with mickey ears on

Follow this journey on Ransom for Israel.

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What You Should Know Before You Share This Food Stamps Meme

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I generally don’t tell people I’m on disability and receive food stamps. I grew ashamed and embarrassed that I needed this assistance to survive. I like being independent, and people look down on me when they learn I get help.

But lately, I notice more and more people bashing those who receive financial support. I’m not keeping quiet any more.

Yesterday I signed on Facebook, scrolled through my newsfeed and this photo popped up:

meme showing two shoppers, one with an empty cart and the word 'job' and one with a full cart and the word 'food stamps'

My body overflowed with anger.

Society often pins people who are receiving SSI, disability, food stamps (or really any sort of financial aid), as addicts or alcoholics, or someone out to abuse the system.

But according to the United States Census, “about 56.7 million people — 19 percent of the population — had a disability in 2010.” Here’s what else you need to know:

About 8.1 million people had difficulty seeing, including 2 million who were blind or unable to see. 

About 7.6 million people experienced difficulty hearing, including 1.1 million whose difficulty was considered severe. About 5.6 million used a hearing aid. 

Roughly 30.6 million had difficulty walking or climbing stairs, or used a wheelchair, cane, crutches or walker. 

About 19.9 million people had difficulty lifting and grasping. This includes, for instance, trouble lifting an object like a bag of groceries, or grasping a glass or a pencil. 

Difficulty with at least one activity of daily living was cited by 9.4 million “non-institutionalized” adults. These activities included getting around inside the home, bathing, dressing and eating. Of these people, 5 million needed the assistance of others to perform such an activity.

About 15.5 million adults had difficulties with one or more instrumental activities of daily living. These activities included doing housework, using the phone and preparing meals. Of these, nearly 12 million required assistance.

Being frequently depressed or anxious, and other mental illnesses such that it interfered with ordinary activities was reported by 7 million adults.

Overall, the uninsured rates for adults 15 to 64 were not statistically different by disability status: 21 percent for people with severe disabilities, 21.3 percent for those with non-severe disabilities and 21.9 percent for those with no disability.

I am one of the many in the country who receive financial aid. I have been on disability for about four years. I have multiple chronic illnesses that prevent me from holding down a full time job to support myself. I battle with anorexia, depression and anxiety (I am not going to get into the debate of whether those are illnesses — that is a blog post in itself). I also struggle with gastroparesis, postural-orthostatic tachycardia syndrome (POTS) and many other medical complications. They leave me feeling constantly fatigued, dizzy and with chest pain and palpitations.

I would love more than anything to be able to attend a full time job. But my body and mind prevent me from doing this. I think sometimes people who can work take for granted what a privilege that really is. Sure, it can be annoying to get up early, or work late, or miss social events. But what if you had to miss those same events because your body simply wouldn’t let you go? You don’t have the energy and you constantly feel like you have the flu. But your illness is invisible, so you have to pretend everything is OK. You don’t look sick on the outside, so you must not be sick, right? Wrong.

If it weren’t for the help I’m able to receive, I would be homeless or maybe even dead. And like many other Americans, I too live check to check. I do not have money to spend on luxuries and electronics. Many times I have to turn down going to a movie or out to eat because I do not even have $10 to spare. I don’t receive enough food stamps to feed myself a decent amount. So in my experience, that picture above is not accurate. The amount of money I get in food stamps a month? Less than $30.

The only places I ever drive to (when I have the energy) are my appointments because I don’t have enough money to spend on gas to go anywhere else. I don’t smoke or drink, and I’ve never tried drugs (yes, including weed).

I’m not saying people don’t abuse the system. I’m sure people do. But far more people actually need the assistance. On top of that, the government does not take those applications lightly. It’s difficult to get help.

And just so you know: You cannot buy alcohol or cigarettes with your food stamps. For some reason, many people believe you can. (And for the record, we should empathize with, not judge, people who struggle with addiction.)

According to the United States Department of Agriculture

Households can use SNAP benefits to buy:

  • Foods for the household to eat, such as:  
  • breads and cereals;  
  • fruits and vegetables;
  • meats, fish and poultry; and
  • dairy products.
  • Seeds and plants which produce food for the household to eat.

Households cannot use SNAP benefits to buy:

  • Beer, wine, liquor, cigarettes or tobacco
  • Any nonfood items, such as:
    • pet foods
    • soaps, paper products
    • household supplies
    • vitamins and medicines
  • Food that will be eaten in the store
  • Hot foods

Please, before you judge someone, be grateful for what you have in life. Because there are others out there who do not have what you have.

The Mighty is asking the following: Describe a meme, image or sign you’ve seen shared online that struck a chord with you, for good or for bad. Check out our Submit a Story page for more about our submission guidelines.

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This Is What It Means to Be a Special Needs Parent

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Five and a half years ago we were blessed with a little bundle of joy on the morning of Christmas Eve. Our daughter Evalyn came into the world as an early Christmas gift for us. She was born with a serious congenital heart defect and struggled after birth. Although we knew about her diagnosis during my pregnancy, we were still not prepared to watch her be whisked away to the NICU and transferred after only a few hours to a Cardiac Intensive Care Unit at a children’s hospital over an hour away.

The first weeks of Evalyn’s life were spent in the hospital and filled with medical challenges and procedures. She had her first open heart surgery at only 7 weeks old, and finally at 9 weeks we were able to bring her home. Due to her rough start in life, it was evident from early on that she was delayed in meeting her developmental milestones. She began working with early intervention at only 5 months old. This is what it means to be a special needs parent.

The subsequent weeks, months and years have led to more diagnoses, more medical procedures and hours of therapies. As time went on the degree of Evalyn’s developmental delays became more clear. She did not crawl until 19 months and did not walk until 30 months. At 2 and a half years old she was only able to say a few single words. Over the past three years she has come so far. Although she continues to make great progress each day, she is still significantly delayed compared to her peers in all areas. This is what it means to be a special needs parent.

Those weeks, months and years have also shown us the amazing little girl we have. She is smart, funny and has an infectious enthusiasm for life. So many things make her the person she is: her kind heart, her quirky interests, her love of people, her smile. We have watched her grow from an adorable infant into an incredible little person, and we are so lucky to have her in our lives. She has taught us so much about strength and love, and has made our lives and our hearts fuller. This is what it means to be a special needs parent.

We are now facing a new challenge as we prepare for the transition to kindergarten in the fall. As Evalyn is getting older, we are finding what an emotional process it is to try to show the world all her strengths we see every day. I know what it’s like to sit through seemingly endless meetings and feel the disappointment and heartbreak after hearing all the things your child can’t do. I know the frustration of having told your story over and over, and still feeling like no one hears you. I know how it feels to be fueled with determination to do whatever it takes to get the best for your child. This is what it means to be a special needs parent.

Evalyn, and every child with special needs, is so much more than what you see on paper. My daughter is not an IEP. She is not a diagnosis. She is not a percentile ranking. You have to look past all the evaluations and test scores and labels to truly know her. It is so difficult as a parent to see how so many people are unable or refuse to do this. As her mom, I will continue to do whatever I can to help the world view Evalyn as we do. No one knows her better. I will be her biggest cheerleader, her number one fan and her loudest advocate. I will not stop until everyone can truly see her. This is what it means to be a special needs parent. 

Follow Mia Carella on Twitter and Facebook.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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