When Your Dream Accessible Home is Financially Inaccessible

Elena next to a Christmas tree

Elena in her new accessible home.

Late last month my wife and I celebrated our eleventh wedding anniversary. That year, 2006, was also the year we bought our first home.

We loved that house, a modest three-bedroom 1-bathroom stucco home with beautiful red oak floors. The tiny kitchen needed some serious updates, but we knew we’d get to that soon enough.

And then Elena was born.

We never did get around to kitchen renovations. Our daughter has quadriplegic cerebral palsy, and as she grew, our beloved house could no longer serve our needs as a family: the bedrooms and bathroom were all on the second floor.

We contacted a realtor, explained our needs, drafted a plan to sell the old home, and told the agent what kind of house would be appropriate for our family. Ideally, a ranch style or bungalow that would accommodate a wheelchair, gait trainer, stander, and a high/low chair.

“Well, I have the PERFECT home for you!” our real estate agent explained that the ranch was owned by someone with special needs. It had an accessible bathroom. Even an elevator! We hopped in the car and drove right over to the house. Our real estate agent was right. The house was perfect. Cutouts underneath the sink to accommodate a wheelchair. Grab bars. Wide hallways. Hardwood floors without any seams or ridges.

And that working elevator! Elena could descend to street level — as well as the basement — without being carried. Only one problem. Our dream house was also disgustingly and tragically out of our price range. It would have been irresponsible to even entertain making an offer.

What a depressing reality that was. Our dream accessible home was financially inaccessible to us.

So, the house sat, languished, and collected spider webs. All I can figure is that people walked into a mid-century ranch and wondered, “What would I need an elevator for?” How much would it cost to have it removed? This is going to cost me.”

A year-and-a-half went by. No viable offers. No movement. Yet still inaccessible to us financially.

As the fall market began to wind down the year before our daughter began kindergarten, the house’s price was reduced. If we sold this, leveraged that, and stopped spending money on anything else, maybe we could swing it.

My heart started pounding as if I were about to go on stage. I snatched my phone, called my realtor and announced, “The price just came down!” She laughed with joy and said she already knew. “I was just about to call you,” she said. “Let’s move now!”

I’ll spare you the tedious details of the closing and get right to the good part: we were able to purchase our dream home! We’ve been there almost two years now and are so very thankful to the family who lived there before and made the extensive renovations to the home. We hope they know what a monumental change that house has made in our lives. Their hard work continues to be put to good use –the house contributes to our daughter’s independence and happiness.

We are two blocks from her school and with the help of the elevator she descends to street level and goes to school with the rest of the first graders who live on our block. We’re all extremely lucky and grateful.

Read more stories from Bernhard:

 

What Does It Mean to Advocate For Yourself?

A microphone in focus with an auditorium in the background, out of focusBefore I started giving speeches across the country about autism, I had no idea what “advocating” meant. The years went on but the idea never fully clicked. But that all changed with a single question.

“My daughter is being picked on and bullied in school. What would you say she could do?”

The question came from a mother during a question-and-answer segment of a presentation I was giving at a university. The daughter was with her, so I turned my vision towards her and took a breath and all of a sudden the concept of advocating made sense.

“School was rough for me, but I never was truly bullied that I know of but I have had situations where I felt belittled and mocked. This isn’t to diminish your challenge now but you’re seeing me up here on this stage today advocating. I may have spoken to tens of thousands but that isn’t the goal here. I’ve had instances where a one-on-one conversation made a drastic change and that’s the goal. My job title may be Autism Ambassador but really anyone and everyone can be one. Your story isn’t my story and my story isn’t yours and that’s what the world needs to know about the autism spectrum.

“To those that bully you all I can say is try and advocate for yourself. Make the attempt to explain to them who you are and why you are. Will it work every time? I’d be telling a lie if I told you it would, but here’s the thing; if you reach one person (yes, if you reach just one person) then maybe that one person reaches another that reaches another and what all this means is that you changed the world! Again, some people aren’t going to listen, some won’t care, and should this happen you’ll have to try again down the line but don’t lose hope. I believe that most people are good and want to learn and you have the power to do exactly what I’m doing today.”

My voice was quivering when I finished that answer because I realized that what I said wasn’t just a filler answer but the honest truth. Anyone and everyone has the ability to change the world and it doesn’t matter if it’s to an entire student body or to one fellow student.

Later on, the woman found my Facebook page and mentioned that the bully in question apologized to her daughter and was now sticking up for her!

This is the mission, this is the goal, and whether you’re a public speaker, a blogger, a parent, a student, or anyone that has any slight affiliation to the autism spectrum you have the ability to change the world. Truly, you do and if we want to get to the world where there is full awareness and more importantly understanding of the autism spectrum it’s going to take us all to advocate, to educate, and to generate the thoughts in others that will make more stories like that of the daughter that was in my audience.

We’re in this together and as I told that girl in my audience we won’t always have someone that will listen, but it only takes one for us to change the world.

Aaron Likens on a sailboatAaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.

More posts from Aaron:

 

A Global Perspective on Accessible Transportation in Taiwan

Easterseals’ Judy Shanley with Eden Social Welfare Foundation Host and Banner Acknowledging the Commitment of Mayors across Taiwan to Accessible Transportation

Easterseals’ Judy Shanley (left) with Eden Social Welfare Foundation Host (right) holding a banner acknowledging the commitment of mayors across Taiwan to accessible transportation

I am pleased to have Dr. Judy Shanley here with a guest post today. Judy is the Assistant Vice President of Education & Youth Transition here at Easterseals.

by Dr. Judy Shanley

A non-government funded organization called Eden Social Welfare Foundation promotes support for people with disabilities all over the world. When Eden hosted the 2017 Cooperation Forum on Accessibility and Prosperity in Cities last month, 14 invited professionals from nine countries came to observe accessible transportation modes of major cities in Taiwan. I was one of the two who had come from America.

Delegate Peter Cosyn from Belgium Boards Accessible Bus

Delegate Peter Cosyn from Belgium Boards Accessible Bus

Our delegation visited five cities to meet with city officials, tour diverse transportation modes, and experience the inclusiveness of mobility options first-hand. From the country’s southern city, Kaohsiung Metro Rapid Transit (KMRT), Kaisyuan Station to the north and Taipei City, Taiwan Railway Keelung Station, to the northern port of Keelung, we listened and learned how the country has been able to build an accessible continuum of transportation services in a very short time. Government officials expressed how a focus on accessibility has affected commerce, economy, community living, and tourism.

One impetus for the increased focus on accessibility and mobility options is the country’s aging population. Demographic statistics released by the Ministry of the Interior show that the 65-and-over population exceeded 2.69 million by the end of 2013. That means older adults are 11.5% of Taiwan’s total population. It’s expected that the population aged over 65 will exceed 20% by 2025.

Full International Delegation to the 2017 Cooperation Forum on Accessibility and Prosperity in Cities

Full International Delegation to the 2017 Cooperation Forum on Accessibility and Prosperity in Cities

Similar increases are evident in the country’s population of people with disabilities. Over 1.17 million people (4.9% of Taiwan’s total population) has a disability. By the end of the forum five city mayors had committed to continuing their focus on accessible transportation and mobility options for their citizens.

Comparative learning — learning from others at the international, national or local levels — is a valuable way to acquire strategies regarding accessible transportation and mobility. In the United States, national programs funded by the Federal Transit Administration enable individuals to learn from each other. I am co-director of one of these programs: the National Center for Mobility Management (NCMM). I am proud of what we do, and I encourage people to tap into the free resources available through projects like NCMM and participate in-peer-exchange forums to share practices.

To learn more about the Taiwan trip or NCMM, just leave a comment here  –I’ll be sure to get back to you.

For more articles about accessible transportation, check out:

 

 

How a Father of a Teen with Autism Let Go of Traditions to Make New Memories

The post Aaron Likens wrote last week was about how changes in holiday traditions can affect a person with autism. Guest blogger Keith Hammond’s post today talks about that, too — in a different way.

Keith is a manager at the adult day services program at Easterseals Serving Greater Cincinnati, and he’s the father of two children on the autism spectrum. He’s written a number of poignant posts for us before, and I’m delighted to have him back with this post about an untraditional way to celebrate the holidays.

by Keith Hammond

A close-up of some hamburger slidersThanksgiving is a joyous family holiday in the United States. From family dinners to football to turkey and pumpkin pie, many Americans enjoy this annual holiday. It may not be “the most wonderful time of the year,” but it’s literally not far from it!

This is not always as true in a family with children who have autism. Thanksgiving is often just a major break in their routine. School is cancelled. Their favorite places are closed. They’re expected to go places they aren’t familiar with, be around people they don’t really know and eat strange foods with different smells and textures. For a child with autism, holiday celebrations can be just one more obstacle to overcome, and that isn’t much fun.

Last November, I drove my son Steven to the hall where my wife’s family was holding Thanksgiving. It is a different environment, with an echo, and not so sensory friendly to my son. My wife and our daughter went there earlier, and over 50 members of my wife’s family were present. I came later with Steven he isn’t good at waiting in line for food, and he prefers a quieter environment, one with much less stimuli.

In previous years, Steven would run upstairs to get away from the noise, the people and the smells. He had also insisted on leaving earlier and earlier each year.

When we arrived at the venue last year, I got out and opened Steven’s car door. Steven reached out, grabbed the door and closed it. I re-opened the car door, and he re-closed it. This went on several times. It all reminded me of an old Warner Bros. cartoon. In the 1949 Daffy Duck short “Holidays for Drumsticks,” Daffy Duck has been trapped in someone’s gas oven to be cooked as the main course for Thanksgiving. Every time the character lights a match to heat the oven, Daffy opens the oven door and blows out the match over and over, just like Steven with that car door.

Thanksgiving wore Steven out so much he fell asleep eating pumpkin pie someone brought us!

Finally, before this could go further, I realized turkey and trimmings were not going to happen for Steven and me. I texted his mom to let her know that we were in the parking lot, we were safe, but we were turning around and heading home.

We were both hungry, so I drove around until we found a White Castle that was open. They did have turkey sliders, but I passed in favor of the more traditional fare one gets at this establishment.

My son and I went home, munched on burgers and fries, watched the Dallas Cowboys, and had a fine afternoon. A new family holiday tradition was born.

Much like the famous “A Charlie Brown Thanksgiving,” I imagined this would be the perfect moment for Peppermint Patty to burst in and scream, “Sliders and onion rings!!!! What kind of a Thanksgiving dinner is this???”

My answer? It was one that my son with autism would eat, and I was thankful for it. We were together, the house was warm, the food was good, and all was calm. Thanksgiving wore Steven out so much he fell asleep eating the pumpkin pie someone had brought us!

Never fret about what you can’t have, but be thankful for what you can have. Cue the music and “Th-th-that’s all folks!”

Read more stories from Keith Hammond about being a dad to two kids with autism:

 

Thankful For Online Friends and the Technology That Connects Us

A white keyboard, mouse and notepad against a blush pink backgroundIt took me a while to accept the label “disabled,” even though I’ve been disabled my whole life. I used to think it was a bad word, something to be ashamed of – and that caused internal strife, because I loved who I was. It wasn’t until I met other disabled people that I embraced the identity comfortably and proudly – and I am thankful for having met and befriended these individuals. Even though we live far from each other, we stay connected online; the internet is tantamount to our survival in many ways.

My disabled friends taught me about disability rights and history, and gave me the tools I need to navigate society as a disabled person. They showed me programs I could utilize to keep my Medicaid while working. They told me different ways to handle rude comments from often well-meaning strangers. And most importantly, they taught me how to be comfortable with my body and mind, and to celebrate even the smallest of victories. It’s a lot easier to tackle the ableism in society, and the negative effects of my various disabilities, when I know hundreds of other people have gone through similar situations.

This holiday season, I am thankful for these connections I’ve made. I am thankful for the internet, which gives us the ability to form support groups and engage in activism. Considering the decades-long timeframe of the disability-rights movement, the ubiquitous nature of social media is a fairly new advancement. I didn’t have access to online forums until I was in my late teens; Facebook wasn’t created until I was in college, and Twitter began after I graduated. During those formative years, I felt very alone as a disabled person, so I don’t take the communities I have access to now for granted.

I wish every disabled person had the financial and physical ability to be a part of an online support group. Millions of people have the means to engage online, but there are disabled people who can’t afford the cost because they live on Social Security. There are people who can’t afford the tech needed to make computers accessible to them. And there are disabled people living in institutions who are wrongfully denied access to tech.

In addition to spending the holidays with family, I will be spending a lot of time with those online friends who changed my world in ways I could never repay. Have a wonderful Thanksgiving.

Are you looking for an online support group? Meet other young women with disabilities on Easterseals Thrive. Find Thrive on their website, Facebook and Twitter.

Erin Hawley is the Digital Content Producer for Easterseals Thrive, and has Muscular Dystrophy, anxiety, and scoliosis. She is also a middle-school teacher, writer, and professional nerd.

More posts from Erin:

 

When Saying Goodbye to a Thanksgiving Tradition Brings Sadness

A piece of pumpkin pie on a wooden table with two pinecones in the backgroundThanksgiving week is here once again and it will be the same as it has been since 2000. My dad and I will leave Saint Louis and drive almost 14 hours to go to my aunt’s who lives outside Washington D.C.

It’s been the same for so long that it isn’t just a tradition — it’s expected. From the towns we drive through, to the feeling of relaxation I feel when we get there, to my aunt giving me all sorts of trouble and kidding with me about food touching to the drive home on Sunday as the sun comes up.

It’s all been the same for 17 years, but this will be the last one. You see, my aunt will be moving to Saint Louis next year so the traditions as I know them will come to an end. I, having Asperger’s, enjoy sameness. I want it. I crave it. And to know that this is the end is difficult.

Sure, Thanksgiving of 2018 will bring new traditions, new experiences, and not having to spend 28 hours in the car might be nice, but it isn’t what is known.

I wonder for others out there if holidays bring this same desire of sameness. My memories are kept in order by annual events throughout the year. This might sound strange, but my memories are associative and the trip to D.C. is more than just Thanksgiving; it’s the passage to winter. It’s the marking of the end of the year which, for me, is one of the saddest days of the year because it will never be the year it was ever again.

I’m 34 and you would expect that adjusting would be easier, but I know come Sunday morning as we leave one last time that it is going to bring tears to my eyes and a tradition that has spanned half my life will come to a final end.

Have you ever had to say goodbye to a holiday tradition? Join the conversation in the comments section.

Aaron Likens on a sailboatAaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.

More posts from Aaron:

 

We Need To See Disabled Women in Leadership Positions

Erin Hawley is the Digital Content Producer for Easterseals Thrive, and has Muscular Dystrophy, anxiety, and scoliosis. She is also a middle-school teacher, writer, and professional nerd. Join Erin and other friends of Easterseals Thrive for a Twitter chat on Thursday, November 16, at 6:00 p.m. CT. Find more details about the chat on the Thrive website!

A woman working on a laptopYoung disabled women need to see disabled women in leadership positions – not only in work, but in all aspects of life. Disabled individuals of any gender are already at a disadvantage when it comes to employment, raising a family, fostering relationships, and directing their care. These disadvantages mostly stem from ableism, which is the systematic exclusion of disabled people in society. But within this ableist framework, disabled people continue living; our world doesn’t stop because society says so.

Disabled women face an extra stigma. We are pressured to conform to impossible beauty standards. We deal with high rates of sexual and other physical assault. We are repeatedly told we are less than our abled, masculine peers, meaning we have to work twice as hard to get the same recognition. And we must also look at the ways queer identity, race, and class affect how we are viewed and treated by society.

Easterseals Thrive is a program that aims to empower young disabled women by giving them the tools needed to achieve the life they want. Through our social media communities or our offline mentoring program in Massachusetts, Thrive gives space for young disabled women to lift each other up so they can all become leaders. And when I say leaders, I mean everything from taking initiative to help out a friend, to running for political office. Being able to witness disabled women in these roles lets us know that we can exist and thrive just as we are.

I want the younger generation to recognize the struggles we face and how we are pushing against those struggles. And more importantly, I want young disabled women to see possibility – because that narrative is often ignored in mainstream media. We must celebrate disabled women more, like Tammy Duckworth – a Senator who advocates for disability justice and human rights. Or Keah Brown, who started the #DisabledAndCute hashtag to promote a positive self-image. These women are both leaders.

And if you want to chat with Keah about her work, you can! This Thursday at 7pm EST, Easterseals Thrive is hosting a Twitter chat called #DisabledWomenLead. We’re talking about ways young women can lead in a myriad of ways, and Keah is just one of our featured panelists. Other panelists include: Madeline Stuart, the first supermodel with Down Syndrome; Jen Venegas, a fashionista and lifestyle blogger with mental illnesses; and Jessica Jones, a blind art teacher. Anyone is free to join in the conversation, though! Just visit the website for more info.

 

Transportation Is Key For People with Disabilities in America

On October 3, WalletHub released its 2017 list of the Best & Worst Cities for People with Disabilities. A quick scroll through the methodology lets the reader know that economy, quality of life, and healthcare factors were used to determine how a city ranked overall. All three are significant factors that contribute to how, on average, a city provides opportunities for housing, employment, medical well-being, and the ability to enjoy a good meal at a favorite restaurant or a walk in the park.

We think there’s a factor missing in the methodology, though: Transportation. You can’t get there if you can’t get there.

The three quality of life metrics examined in the WalletHub research that come the closest to transportation include: number of wheelchair-accessible trails per capita, share of population within walkable park access, and walkability. All good, and metrics that Easterseals supports as part of its mission to make positive, profound differences in people’s lives every day.

Walking is a form of transportation and getting to parks or trails is dependent on completed pathways, curb ramps, and safe places to cross the road, but WalletHub missed out on the chance to measure a very important metric: availability of public and private transportation options. Whether bus, rail, accessible paratransit, taxi, ferry, shared-ride, bikeshare or a neighbor lending a hand as a volunteer driver, transportation availability is the key that opens the door to education, jobs, doctors’ appointments, shopping, and hobbies.

Easterseals has been at the forefront of helping cities in the U.S. address the transportation needs of people with disabilities. In her reaction to the WalletHub article, Easterseals blogger Beth Finke mentions that the availability of public transportation in Chicago means that she can live more independently, and as Karin Willison, blogger with The Mighty, points out in her own take on the WalletHub list, transportation is essential to quality of life and should not be left out of the ranking equation.

Transportation is important to Easterseals because we know how important it is for people with disabilities who want to live life as independently as possible. Easterseals has collaborated with communities across the country for over three decades to support the availability of ADA-accessible transportation.

From Easterseals Project Action’s work offering training to transportation professionals to the technical assistance we provide through the National Aging and Disability Transportation Center and National Center for Mobility Management to our local-level in-person facilitation that’s part of the Accessible Community Transportation Initiative, we want to help all cities in the U.S. be the best that they can be when it comes to providing affordable, accessible transportation.

 

What Happens When My Thought Process is Interrupted

A Shinkansen train

A Shinkansen train (source)

When you say my name while I’m in the midst of something, I’ll give a response of, “WHAT?” It sounds as if I’m angry, but here’s the thing: I’m not angry at you. I’m flooded with emotions and confused as to why the proverbial train stopped.

Proverbial train; let’s run with that…

Take the Shinkansen (better known as the bullet trains of Japan) known for their efficiency and high speeds. Let’s say you’re on an express train from Tokyo to Osaka. This, being an express train, has no stops between Tokyo and Osaka and when you’re on this train you’re expecting a quick journey. Let’s say, halfway through the trip, the train begins to slow and come to a stop at a station and the doors open. This isn’t supposed to be happening. There would be confusion among the passengers. Why did you stop? When will you be going again? Will you be stopping again? Of course the passengers will become irritated during this delay because it wasn’t planned for, nor was it expected. This is what daily life with Asperger’s is like.

In any thing I do, when I am doing it, I am like that Shinkansen express train. I am hyper-focused on the goal and when an unexpected interruption occurs, even mildly, my response is like the passengers on that train.

I mean no ill-will when I give a response that sounds angry. It’s easy for us to have tunnel vision and only see what it is that we are focused on. When I was in school, if I was working on something, I’d get irritated and annoyed at any person who spoke to me. Why? Let’s go back to the train example.

Let’s say the efficient Shinkansen wasn’t all that great at getting up to speed. Once up to speed all is well but getting up to speed is a challenge. That’s the way my brain is; once at speed I can focus with perfect clarity but that one interruption can bring about a complete change in ability to focus or achieve a task, hence why the unsuspecting interrupter is going to get what sounds like an angry answer.

This post isn’t to say that interrupting a person on the autism spectrum should be avoided at all costs. Quite the contrary; this post is to highlight the reason why you might get a response of annoyance and that we aren’t truly angry at you, we may just be angry at how difficult it is for us to change speed, to adjust our attention, and our fear of being unable to once again achieve the speeds we had been going.

Aaron Likens on a sailboatAaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.

More posts from Aaron:

 

9 Questions Kids Ask About Blindness

My Seeing Eye dog Whitney and I took a commuter train to a Chicago suburb last week to talk with third graders. It was Disability Awareness Week at Wilmot Elementary in Deerfield, and I was there to talk about what it’s like to be blind and get around with a Seeing Eye dog.

Whit's always up for a class visit.

Whit’s always up for a class visit.

I started our presentation to the eight- and nine-year-olds explaining three rules to keep in mind if they happen to see a guide dog with a harness on: don’t pet the dog, don’t feed the dog, and don’t call out the dog’s name. “Those things can distract a Seeing Eye dog,” I told them. “It’d be like if someone nudged you or kept calling your name while you were working on your spelling words at school. You wouldn’t be able to concentrate on your work.”

I suggested we come up with a fake name for Whitney. “We’re going to be here at your school for a while today, and you might want to say hello if you see us in the hallway,” I said, explaining that if they use my Seeing Eye dog’s fake name to say hello, Whitney wouldn’t look their way and get distracted from her work — she wouldn’t realize they were talking to her.

I asked the kids what their principal’s name was. “Mrs. Brett!” they called out. “Does anyone know Mrs. Brett’s first name?” I asked. After a moment of silence, one sweet little voice rang out. “I do! It’s Eileen.” And so, it was agreed. The kids would call Whitney by her code name: Eileen.

Most of the questions during the Q&A part of the session had more to do with blindness than dogs:

  • Your dog is really cute. Do you know what she looks like?
  • How do you drive, I mean, like, can you?
  • How do you know what to wear?
  • Did you ever bring your dog to the vet and then he had to stay in the hospital?
  • How do you get in and out of bed?
  • Do you ever even get into a car?
  • Do you know what made you blind?
  • Isn’t it hard to get around when you can’t see?
  • Does it ever make you feel sorry being blind?

I tell kids at school visits they can ask me anything. I promise to give an honest answer, so when that last question was asked I had to say yes, sometimes I do feel sorry being blind. “Not right now, though,” I was able to answer sincerely. “Just being here with you guys, hearing your smart questions? That makes me feel happy!”