Posted on November 4, 2015
We’ve all seen it on Facebook. A picture of a child, with some sort of disability/medical condition/genetic anomaly, and the message “Like if you think this child is beautiful” or “Share if this child deserves friends” or something like that. Most of the time the picture is being posted from a website, not the child’s family. All of this unnerves me. I think social media has the power to draw attention to many issues and conditions that people may not otherwise know about. The Ice Bucket challenge is a good example: Amyotrophic lateral sclerosis research received millions of dollars because of it. People were talking about ALS and learning about ALS at an unprecedented rate.
But it’s different when a website is pushing the “Like if I am beautiful“-message for a child no one knows. It concerns me because I feel that child is being made into a mascot or tragic figure that disability advocates have fought for decades to move beyond. People “liking” that photograph aren’t doing anything to help that child or the medical professionals who are working to enhance quality of life. The family isn’t receiving any benefit from the “like” and the viralization of their child’s photo. Instead, strangers around the world are looking at that picture and saying, “ooow, what does he have?” Or they’re saying “how is that possible?” Or they’re saying “that poor child.” It reminds me too much of the telethons of years gone by. Haven’t we moved beyond that? Additionally, the websites that latch onto the child’s picture and post it could make money on each “like” and “share,” right?
While I understand the service-level intent of the people who “like” and share the photos, it worries me about the underlying assumptions and beliefs the world has about disability and difference. So if you see me on Facebook, you won’t find me liking some stranger’s picture or sharing other people’s posts. That’s the role of the parent to do. The reality is families have children with disabilities daily. What my friends have taught me in the disability community is they do not view themselves as heroes. They don’t need to be patronized or sympathized. If you see a child who is beautiful, tell the parent that. Talk to the child. Include the child. Don’t bother “liking” the photo you’re being urged to like because the child and/or her parents pretty much never have anything to do with the post.
Posted on October 9, 2015
A colleague and I were left waiting for his DART paratransit bus, yet again, last week. It would arrive a full hour and 15 minutes after his scheduled pick-up, giving us abundant time in the hot sun to grouse about and consider the ever-late paratransit bus in Delaware. I’ve worked in the disability sector in Delaware for more than 15 years; the late pick-ups and drop-offs were a problem then and they continue today. We brainstormed how we could change the system to better serve people’s needs.
Our conversation led us to talking about Uber, the popular quick pick-up transportation service taking the country by storm. I quickly logged onto Uber to figure out how much it would cost for him to get from his residence in Wilmington to Newark for our meeting and then back home. At first, I was startled by the cost of $25 each way; especially compared to his $3 paratransit fare (now $4 for non-ADA routes). That seemed way too prohibitive. This didn’t even take into account that he needs a wheelchair-accessible vehicle to drive him. He doesn’t have an option to “just call a cab,” since accessible cabs aren’t available in our area. The more talking we did, the more I started to wonder about the cost.
One of the biggest barriers people with disabilities face is being un-employed or under-employed and that’s often due to not having reliable transportation. If my colleague were going to work every day, do you think his boss would tolerate him showing up an hour late on a regular basis? You better believe not. However, if my colleague knew he had reliable transportation that would take him to work when needed and take him back home at the end of the day, would he be able to land that full-time job with competitive wages? I would think so.
We estimated that he would pay about $12,000 per year for an accessible Uber to get him from Wilmington to Newark and back (five days a week for 52 weeks). At first that seemed ridiculous to me, but then I thought about how much I spend each year on gas ($1,200), car insurance ($1,044) and car maintenance ($1,000). While I’m fortunate that I don’t have to factor in parking – it’s free at my job – parking for many commuters adds another significant expense. My husband, for example, has to pay a $2,100 parking fee annually. My colleague wouldn’t have to incur any of these costs as an Uber-user, however. Moreover, his cost of using Uber could be further reduced if, say, he were to find a job that required him to travel just a mile or two up the road. (When I searched for an Uber from the City of Wilmington to North Wilmington, the quote was $12 – less than half the Wilmington-to-Newark fare, which would essentially make my colleague’s travel expenses the same as mine.)
What we need is for owners with accessible vehicles to join Uber, and to designate themselves as accessible Ubers. Then we could try it out! If people with disabilities had access to reliable accessible transportation, they’d be able to get the jobs they want and become more vital members of the community. Waiting 75 minutes for a bus, alone or with a colleague, is never acceptable and isn’t going to move us forward to a more inclusive world. I also have to wonder whether Human Resources departments, as part of their employment offers, would cover all or part of the Uber fee since doing so would guarantee that the employee would be at work on-time and able to fully participate in the work environment. For businesses that already cover parking fees for employees, subsidizing employees’ use of Uber wouldn’t be that different.
So, accessible vehicle drivers who have vans that sit in drive-ways and garages when not in use, what do you think? Imagine the freedom you’d be offering people who physically cannot drive by bringing them to work, or, at a moment’s call, taking them on an unplanned date or trip to the grocery store? Right now, riders of paratransit in Delaware can’t have spontaneity in their lives, as they are tied down to a reservation system which requires two day’s notice. Working as an Uber driver would earn you money while also helping you promote the ability of individuals with disabilities to gain employment and be active members of the community.
Posted on August 31, 2015
I’m concerned about an epidemic which has the potential to impact every single person in Delaware: distracted driving, or, more precisely, texting and driving. A current commercial is particularly powerful. A mom is busy checking how many “likes” her daughter’s Facebook post has received … when she crashes. The message is “it can wait.”
It truly can. I’m frightened by the number of drivers I’ve seen who aren’t watching the road at any given moment. If one looks up the statistics, it’s downright scary. The average person looks at a cell phone for five seconds while responding to a text. Those five seconds are how long it takes to drive the length of a football field at 55 mph. Imagine doing that blindfolded and it seems absurd. But drivers have no problem typing in their passcode and then texting or checking their social media account—all while essentially blindfolded.
What, then, can we do? Delaware and 45 other states have bans on handheld cell phone use, and fines for getting caught, yet that threat doesn’t seem to disincentivize drivers into not texting and driving. Can the police step up patrols? Sure, but would it really matter? If a person is texting and driving and there’s no one there to issue a citation, does that make it any less dangerous? No. The National Safety Council reports that cell-phone use while driving leads to 1.6 million crashes each year. Figured another way, it’s involved in 26 percent of all crashes, each year. Moreover, the National Highway Traffic Safety Administration (NHTSA) notes that nine people die every day as a result of texting while driving. Here’s what I’m thinking: let’s open a conversation with our families about this. If you’re a parent, tell your child it’s ok to remind you to not reach for your phone while at the wheel. Be comfortable telling your friend to not touch her phone while she’s driving. If you carry a purse, keep your phone in your purse on the floor while driving. Get into the habit of putting your cell phone in the glove box or console when you get in the car. For decades we survived without being able to be reached instantaneously, and your family and friends would rather you be unreachable while driving than injured or killed while trying to respond to their call or text.
I’m considering starting a movement to hand out little signs that say, “I saw you texting and driving. Please don’t. It can wait.” So, if you pull up to someone at a stop light or in a parking lot, you can just flash the sign to remind them. We’re all in this together, right? Don’t we have an obligation to look out for one another, while protecting ourselves? As a driver, you have the potential to impact me and my family as automobile occupants or pedestrians. Your decision to respond to that text or check how your friend is doing on CandyCrush or post the selfie can produce a permanent life-changing result. Accidents cause a literal chain reaction and the impact of injury or death is far-reaching, not just affecting those immediately in the vehicle(s) but their family, friends, school and community. According to the NHTSA, 1,153 people are injured daily in crashes that are reported to involve a distracted driver; that’s 420,845 injured people every year. Some of those injuries heal, while others cause lifelong disabilities; all of which could have been prevented. It’s truly not worth it.
Will my little sign help? How would you feel if someone brought your texting and driving to your attention? Will people feel like I’ve overstepped boundaries? They may. But if I don’t say something to them, who will? One of my favorite quotes from Einstein is, “The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing.” I implore all of you reading to not “look on and do nothing.” If you see someone texting and driving, stop them while you have the chance. You may just save a life, theirs or someone else’s. Future generations thank you.
Posted on June 27, 2015
The other day I came upon a traffic light with no power, just as drivers of three other cars approached that same intersection. I did what everyone else did. I stopped where the dark traffic light was, made eye contact to acknowledge the other drivers, then took my turn passing, safely, through the intersection. This acknowledge-the-other-driver dance made me think about the power of acknowledgment.
I’m that person who walks by you and says “hello” every single time. I’m always astounded to be alone with another human being in a relatively confined area such as a hallway, sidewalk, or running track (who am I kidding? You won’t find me on a track!) and to have that person not make eye contact, smile, nod or do anything to acknowledge my presence. My shock isn’t because how dare they not acknowledge ME, but more so because we are social beings. We are interdependent. We are all in this world together. We need each other. I greet everyone, because everyone deserves to be acknowledged as a living, breathing human being, who has feelings, thoughts, and a soul. I’m not necessarily getting into a deep conversation with you when I say hi, but I want to greet you and acknowledge you and honor you as a person.
Oftentimes individuals with disabilities are not acknowledged socially, and therefore are hidden from the world around them. One of the best pieces of advice I can give to a person with a disability or their family/caregiver/loved one is to explore all types of communication options. Even if you were assessed several years ago and told you were not a candidate for whatever reason, try again. The power of functional communication is enormous and I want everyone who I acknowledge to be able to acknowledge me back. For some individuals who have never used words to communicate, I want there to be a tool that they can utilize that helps them say “hello” or “how are you” or “I think you’re beautiful” spontaneously to the person on the street. One never knows who you will pass and the impact he/she may have on your life.
The Natal tribe in South Africa doesn’t waste their time on “hello” or “hi” when greeting another person. They instead say, “Sawa bona,” which means “I see you.” Until they tell someone “Sawa bona” that person doesn’t exist in their eyes. The person then replies, “Sikhona,” or “I am here.” Those two phrases connect those people together. My goal is for everyone, with all of their gifts and strengths and labels, to be seen at all times. We must find ways to guarantee individuals with disabilities are seen and acknowledged as human beings, citizens, neighbors, friends, and family. Sawa bona.