"The city you live in can have an enormous impact on your quality of life – especially if you have a disability. From wheelchair accessible sidewalks to employment options to the weather itself, there are a variety of characteristics that can determine whether your hometown is a good place to live.
So how disability-friendly is your city?
This could depend on the kind of special needs you have. A lot of city features just might not be as important for you as others. State and local laws will also be a factor. As a minimum, the American with Disabilities Act requires that state and local governments make their programs and services easily accessible to people with disabilities. With that said, it doesn’t mean that all cities and states are alike. Some places may go out of their way to make themselves more appealing to people who happen to be disabled, while other cities might barely do what’s legally required of them. Whether you’re looking to move to a new city that’s great for a person with a handicap or you’re curious to see how accommodating your hometown is, this checklist will help you figure that out. We’ll cover the 77 features that can make your city or town disability-friendly."
Imagine what would happen if all the Texans with disabilities voted in the 2018 election.
This is such a difficult scenario, yet it happens every day.
A child, perhaps mentally or physically disabled from birth, or one who might have suffered an accident earlier in life, grows into adulthood, having been cared for by very loving parents who did everything they could possibly do to care for their child.
As everyone grows older, eventually both parents die, leaving behind the child with disabilities, now an adult, who has outlived his or her parents. Maybe the parents have made arrangements for their adult child’s care – or maybe they have not. Often, if arrangements were made, those arrangements involved a sibling’s involvement. A brother or sister, who loves their sibling with disabilities, finds him/herself suddenly responsible in ways they never anticipated, no matter how well prepared they were by Mom or Dad.
They need help. Their challenges include fitting the many new tasks and responsibilities for their sibling into their own life routine. Will the sibling with disabilities move in with the abled one? How do the sibling with disability’s needs fit into the routine of family life, especially when younger children, the nieces and nephews of the sibling with disabilities, are involved? Who attends doctor appointments? Or makes medical decisions? How does it all get paid for, especially if Mom and Dad didn’t leave any money behind?
Compounding the challenges, it’s not unusual for the sibling with disabilities to live in one location, while the new caregiver sibling lives out-of-state, hundreds – or thousands! – of miles away.
This is a relatively new situation. In the “old days” children born with disabilities didn’t always live to be adults, or at least didn’t outlive their parents. Decades ago, adult children hadn’t moved to other locations. And of course, so often, children born with disabilities were put into “homes” – state institutions – and these questions and challenges didn’t arise.
Fast forward to today, and this scenario is not at all unusual. Further, even if living, medical, and financial arrangements can be made, family circumstances change, laws change, insurance and other payment possibilities change…. It’s tough enough managing for one’s own core family, much less having to worry about a loved one with disabilities joining that family, no matter how much siblings love each other, how dedicated they are, or how thoroughly arrangements had been made by parents prior to their own deaths.
If this sounds at all familiar to you, you may be pleased to hear that there are people who can hold your hand through the process, and who can help you keep up with all those arrangements, and changes, and the monkey wrenches that can upset them… In particular, if your loved one with disabilities lives any distance away, it will be imperative you find a trustworthy professional to help you dodge the pitfalls and potholes you may encounter.
Private, independent health and patient advocates, and care managers to the rescue! Find them here: www.AdvoConnection.com
These professionals know the ins-and-outs of the systems you will need to tap into to get the help you and your loved one need. Whether it’s financial guidance, medical care, living arrangements, adapting your environment – advocates and care managers know the resources to help you get the assistance you need.
The lives of adults with disabilities have changed dramatically when you consider how their lives have been extended, and the quality care they deserve is provided to them.
Let health and patient advocates and care managers support you by helping you determine the right answers for your family’s situation.
By Dr. Darla Clayton, PsyD, The Mobility Resource
1) You are not alone.
There may not be anyone else with the same constellation of symptoms as your child but there are people with similar challenges. Find those people. I have never met anyone with all of these same challenges as my kid but I have a strong network within each separate diagnosis. We have made wonderful friends and have found—and I hope provided—a great deal of support within each of these. I just have to pop onto one of my Facebook groups and I’m immediately reminded, I’m not alone.
2) You too deserve to be cared for.
We are placed in a position of caring for others nearly constantly. However, you still need and deserve to be cared for. That entails asking friends or family to bring a meal by every now and then, or going for a pedicure, or a date night, or whatever else you enjoy doing. Whatever makes you feel special and taken care of, take the time to enjoy it, you are worth it!
3) You aren’t perfect—and that’s ok!
No one is perfect. We all make mistakes. We can wallow in our goof-ups or move on! Try to shift your thinking, maybe there was a good reason you missed that appointment, that you were sure was on Tuesday but apparently was on Monday. Maybe your kiddo had a tough day at school and just needed the night off. Who knows? But beating yourself up isn’t going to change the situation, so try to move on.
4) You are a superhero.
You may not leap buildings in a single bound or run faster than a speeding bullet but you are a superhero none the less. Everyday, you manage situations that a regular parent would think are impossible. You stretch tight muscles, remember pills, inject and infuse medicine. You hold hysterical children during horrendous medical procedures. You deal with tantrums and melt downs. And most often manage not to have a tantrum or melt down yourself. You encourage your child to do things doctors told you they would never do but you never gave up hope. You are a therapist, nurse, doctor, friend and confidante. You are no regular parent.
5) Therapy is play.
Having sat in on several therapy sessions, I have been frustrated by what I thought was premature discharge from therapy on more than one occasion. Since then, I have grown, I have learned and I have come to understand. For children, therapy is play and play is therapy. What I mean is that the best therapists find ways to make my son engage in challenging activities that he otherwise would have balked at, by making it a game that he wanted to play. We took a page from their book and did the same at home.
6) Play is therapy.
Yes this is different from number five. After discharge from therapy, we sought extra curricular activities for my son that would offer therapeutic benefits. He played sled hockey, runs on a track team, learned to shoot archery and takes swim lessons. All of this is therapy. He’s learning, having fun and getting stronger. Win, Win and Win!
7) Make time to enjoy your kids
We super parents tend to be fairly busy and often over scheduled. However, while everything on your calendar is important, it’s also important to make time to play, laugh, be silly and just enjoy your kids. Read to them, snuggle with them, engage with them with what’s important in their worlds. Make memories outside of hospital walls.
8) You will be obligated to make heart wrenching decisions.
You will have to make painful decisions that hurt your heart and leave you questioning everything you thought you knew or understood. Know that you are doing your best, remember number three. I am guilty of agonizing over these types of decisions, they can become really overwhelming to me. Talk about your conundrum with others who get it and trust yourself to make the best decision. Make it move on and once it’s made don’t rethink it. Easier said than done, but worth a try!
9) You won’t always get it right.
Many of the choices you are forced to make have no right answer, just the lesser of the hard and painful wrong choices. You will do your best but you won’t always get it right no matter how many sleepless nights you spend agonizing over how to handle a situation.
10) Forgive yourself.
Yes, you will screw things up sometimes despite the very best of intentions. No amount of torturing yourself will make you feel better, nor will it help you to make better choices. Remember many of the toughest decisions have no right answer.
See also: 7 Confessions of a Special Needs Mom
11) Being a parent is hard. Being a parent to a child with extra needs is extra hard.
It can also be extra rewarding. Make us extra passionate. And will almost always make life extra interesting. With the challenges come the rewards. Sometimes you have to search your heart for the rewards but they are there if you look for them.
12) Parenting a child with extra needs is like a marathon.
For those folks who are trying to win a marathon, there are no breaks. If you want to stay in the race, you eat, drink and even pee while running. But our marathon will go on for the foreseeable future and beyond. So remember, you don’t need to win, just make it to the end. The guy who comes in last place in the marathon, he took breaks, he stood and drank some water, grabbed a quick bite and used the porta-john for his business, then got back on the road. Give yourself those moments—however brief—that are for yourself. Goodness, you might even get to pee in peace every now and then.
13) Don’t lose yourself.
Don’t let being the parent of a special needs child create or reshape your identity. We are many things, being the parent to a child with special needs is part of our identity. But it shouldn’t be all of our identity. When you focus all of your life, all of your contacts, all of yourself around your child and their needs, who you are can get lost. Find things in your life you enjoy doing, a glass of wine, a hobby, shopping for yourself.
14) Keep your sense of humor.
Certain things get under my skin, we all have our buzz issues, one of mine is people firstlanguage. But if you’re not careful, you can become overly sensitive to so many things that people start to avoid your company. Many colloquialisms like “I almost had a stroke”, or “I nearly had a heart attack” are disconcerting to parents whose children have in fact had a heart attack or a stroke. However try to remember that people are not making these comments to offend or upset you.
15) Celebrate the little things!
Brag about those accomplishments that might seem small to others but are huge for our kids! Our kids develop on their own clock, they learn many skills late and some they never master. A wiggled toe that couldn’t wiggle before, a word, a sentence, a smile, a hug, whatever that milestone may be, share it with those who love you and your child.
16) Don’t let typical parents get you down.
I know how hard it is to hear from parents that their child six months younger than yours is walking and yours isn’t. Or dealing with the well meaning stranger who asks why your 2-year-old is scooting around on their butt rather than being up on their feet. Try to remember that these people lack the context that we are constantly embedded in. Explain, teach, be patient, raise awareness amongst those who just don’t get it. And remember, typical parents deserve the right to brag too and their pride at their child’s accomplishments is not meant as a knock to your amazing kiddo.
17) Don’t compare.
This is another challenging one folks, but worth the work. All kids are different, typical, or with extra challenges and they will grow and develop at their own pace. If a developmental milestone isn’t met as you think it should be, certainly talk to your child’s doctor. Comparing, siblings, cousins, kids in the daycare class, or even comparing kids within the same disability type rarely serves to make you feel better. Your child is unique, and will have their own individual strengths and challenges.
18) You don’t have to be “THAT” parent.
You know the one who clearly spent 10 hours creating the amazing snack shaped like an animal with licorice whiskers. The one who sends adorable treat bags for every holiday. The one who finds the coolest gifts for the teachers every year. And whose child is always dressed in the cutest outfits that somehow never get dirty. If that’s the mom you are led to be, more power to you! However, I have found that there are always enough of those mom’s in my kid’s classes to keep them in cute snacks and treat bags. Since I have bigger fish to fry, I let them have all the glory!
19) Make time for your marriage.
Marriage is hard work, period. Parenting is hard work, period. Parenting a child with special needs, is especially hard work, period! For those of you who are married or in a relationship, make time for that relationship away from your children.
See also: The Barracuda Momma: Celebrating Mom’s Gift of Sacrifice
20) Trust your instincts.
You know your children best. Doctors, teachers, therapists are all fantastic resources but if you don’t feel like you’re being heard, or your child’s needs are being met, it’s very reasonable to get a second opinion. Don’t be afraid to fight for your child and their needs. While the professionals are experts in their areas, you are the expert on your child.
Answering to Mom, Mama and Mommy, Dr. Darla Clayton is a Coach and psychologist as well. She earned a doctorate in clinical psychology from Indiana University of Pennsylvania. She is a wife and a mother to two fantastic children, a 9-year-old son who has cerebral palsy and a 5-year-old daughter.
Inspired by her son’s success competing in adaptive sports, and concerned by the lack of sport options available to him, she founded Strong as Steel Adaptive Sports in 2011. The team provides sport specific training and opportunities for children ages 5 to 21 with physical disabilities and visual impairments. Disclaimer: Dr. Darla writes from the perspective of a mom in the midst of raising a child with a disability and one without. While she works as a psychologist in her other life, she would like to make it clear that she is in no way intending to offer medical or mental health advice through this venue.
As Chieko Asakawa walks around IBM’s campus, she explores new ways of getting from point A to point B. She recognizes the faces of colleagues approaching her and greets them. She reads snack labels and decides whether to eat them. Although she is blind, Asakawa doesn’t need a human or canine companion to complete these tasks. She’s helped invent a smartphone app that, as she explained in a recent TED talk, “understands our surrounding world and whispers to me in voice or sends a vibration to my fingers. Eventually, I’ll be able to find a classroom on campus, enjoy window shopping, or find a nice restaurant while walking along a street.”
Asakawa has been able to turn her disability into a professional asset, to the commercial benefit of her employers. But many people with disabilities enter workplaces that don’t enable them to do the same.
A new study from the Center for Talent Innovation (CTI) found that, according to the 2015 US government’s definition of disability, a significant portion of the white-collar workforce has a physical or mental impairment that substantially limits a major life activity: 30% of a nationally representative survey of 3,570 white-collar employees. The numbers are similar across gender, race, and generation. Not only do employees with disabilities comprise a large talent pool, it’s a remarkably innovative one: 75% of them report having an idea that would drive value for their company (versus 66% of employees without disabilities). Yet, we find, individuals with disabilities frequently encounter workplace discrimination, bias, exclusion, and career plateaus—meaning their employers lose out on enormous innovation and talent potential.
Many people are surprised to learn that such a high rate of employees have disabilities, because they generally assume that “disability” means having an obvious physical condition. However, close to two-thirds of the study’s respondents have a disability which, while included under the federal definition, is invisible. These might include diseases like lupus or Crohn’s, whose flare-ups are incapacitating; migraines, which can cause temporary blindness; mood disorders like depression; learning disabilities like dyslexia; developmental differences like autism; and other forms of neurodiversity. Some 62% say that unless they deliberately disclose their disability, most people have no idea it exists.
Counseled by family, friends, or even employment attorneys to keep silent for fear of discrimination, only 21% of employees with disabilities disclose to HR that they have one. And they’re right to be so hesitant. More than a third of survey respondents with disabilities say they have experienced negative bias while working at their current companies—and the more visible the disability, the more likely the bias. Whether intentionally or not, people exclude their colleagues with disabilities by misjudging them and underestimating their intelligence, insulting them, avoiding them, or making them feel uncomfortable by staring at them or refusing to meet their eyes.
Employees with disabilities report strengths such as persistence, discipline, and willingness to commit, but feel employers don’t see this potential. Among the 75% of employees with disabilities who say they have market-worthy ideas, 48% say their ideas went ignored by people with the power to act on them, 57% feel stalled in their careers, and 47% feel they would never achieve a position of power at their company, no matter how high-performing or qualified they are. In interviews, we heard that individuals with disabilities face deep stigma and bias (whether conscious or not) from colleagues and managers. One millennial survey respondent confessed, “I’ve been here for six years without a promotion, even though my performance is excellent. I can’t prove that my cerebral palsy has played into that, but the fact is, you never see executives with physical disabilities in the industry.”
But there are ways to remove the challenges faced by people with disabilities and open up innovative opportunities. Our research shows that the same inclusive leadership behaviorsthat leverage diversity to drive innovation and market growth can enable managers to support individuals with disabilities. These behaviors include ensuring that everyone on a team gets heard, giving actionable feedback, empowering team members to make decisions, and making it safe to propose novel ideas. Employees with disabilities who have inclusive team leaders are 36% less likely to face bias (compared to those without such managers), 14% less likely to repress themselves at work, and 32% less likely to feel stalled in their careers. And they are more likely to have their ideas endorsed.
But teaching managers to display inclusive leadership behaviors is just the first step. Companies also need to create a culture of support and inclusion by doing the following:
- Provide training. Many new employees with disabilities need support to get up to speed, but their colleagues and managers may not know how to help them—or have the patience to do it. Companies should put systems in place to help not only individuals with disabilities, but their managers and peers as well. In its strategy to help employees with disabilities build long-term careers, Unilever partnered with Connecticut’s Department of Rehabilitation Services and Southeastern Employment Services to launch a training and placement program. The program provides training for customer service analysts and regional distribution coordinators—two entry-level positions with frequent openings — as well as disability sensitivity training to existing employees to help them best support colleagues with disabilities. The goal is to train 20 to 30 employees with disabilities annually with a 50% conversion rate to full-time positions.
- Offer leadership development opportunities to employees with disabilities.Unconscious bias can cause managers to overlook people with disabilities for leadership programs. To combat this, managers can create development options specifically targeted toward these individuals—and include them in opportunities that already exist and are open to different talent cohorts. For example, Abilities in Motion, KPMG’s employee resource group for employees with disabilities and those with family members who have disabilities, launched an initiative two years ago to give the firm’s employees with disabilities an opportunity to hone their leadership skills. The initiative connects aspiring leaders with disabilities to senior leaders within the firm who offer advice and counsel. These individuals also attend KPMG’s “Inspiring Change, Influencing Inclusion” leadership development conference, where they participate in workshops and panels with senior leaders with a focus on building executive presence and leadership skills.
- Provide role models. A prominent executive with a disability makes it easier for others with disabilities to see themselves in leadership positions at their companies. For those who don’t have or have had less experience with people with disabilities, such role models help shape their perceptions and assumptions about what a leader looks like. Mark Bertolini, chair and CEO of Aetna, had a ski accident that severely damaged his spinal cord. After the accident, he insisted on returning to work, using a special chair to support his neck, a one-handed keyboard, a couch for rest when needed, and other accommodations. He continues to speak openly about the ongoing chronic pain caused by the accident to act as a role model and show others what’s possible.
- Create allies in the organization. Encourage employees to speak up and show their sympathy especially colleagues who are familiar with the challenges faced by people with disabilities either through personal relationships or caregiving. Shaun Kelly, global chief operating officer of KPMG International, makes a point of speaking publicly about being a caregiver to his daughter, who has Down Syndrome: “The stigma seems to go away because there’s somebody in a leadership role who is comfortable talking about it.”
For too long, companies have viewed employees with disabilities through the lens of compliance and accommodation. There’s no better time to start to look at disability through a different lens: of inclusion and infinite possibility.
Image: Tim Walker for BoF By BoF Team May 4, 2018 22:04 "Fashion has been an industry that I've long felt excluded from, despite being incredibly passionate about its transformational opportunity and ability to really change people and conversations and culture," Sinéad Burke, the three-and-a-half-foot activist, tells Imran Amed.