Sean Adelman's Blog, page 3

Hi everyone! Amy

Hi everyone! I’m going to talk about my time and experiences as a wheelchair user and the unfortunate difficulties that sometimes came with that.I’d like to make it very clear that I was only a FULL TIME wheelchair user for 1.5 years when I was 8 years old and my father was my carer so luckily I would always have him to push me in my wheelchair.

That being said, nowadays I still do sometimes use my wheelchair if my prosthesis is causing me unbearable pain – but I still prefer to have somebody pushing me as I don’t feel confident enough to get around just by pushing myself.

Here are some valuable statistics and the websites that I am quoting them from:

2.2 million people in the United States depend on a wheelchair for day-to-day tasks and mobility.

&

There are around 1.2 million wheelchair users in the UK, roughly 2 per cent of UK population.

https://www.nichd.nih.gov/health/topics/rehabtech/conditioninfo/Pages/people.aspx

How many people use assistive devices? – NICHD

www.nichd.nih.gov

One in five Americans—about 53 million people—has a disability of some kind. 33 million Americans have a disability that makes it difficult for them to carry out …

http://www.efds.co.uk/resources/facts_and_statistics



We can all agree that this is a HUGE percent of the population so we have to ask, why are so many places still inaccessible?

Why are some wheelchair users still having to face struggles that could be easily avoided if accessibility was at the top of our local authorities priorities?

As I’ve said, I was a full time wheelchair user for 1.5 years after an amputation and knee fusion at 8 years old.. my father was the one that pushed me in my wheelchair.

I have to admit that for me life as a wheelchair user was not easy back then – and it still comes with it’s struggles even now!

Me and my Dad faced quite a few problems in our everyday life being out and about that I’m sure a lot of wheelchair users can still relate to.

It was very difficult to enter shopping centers that didn’t have automatic doors or a disabled entrance, as it was impossible for my Dad to go in front of my chair and open the door and then push me through!

We had to rely on kind and helpful members of the public so much throughout my time in a wheelchair. In fact, at some points we even avoided some shops altogether as we knew that the struggle to get me in there would be too complicated.

I distinctly remember the simplest of tasks becoming difficult, reaching for items on the top and higher shelves for example was so hard for me to do alone and I thank my lucky stars that my Dad was there to assist me!

As I recall these memories I have to wonder if I didn’t have my dad to push me in my wheelchair and I had to enter a building without automatic doors or a disabled entrance, what would I do?

I’d find it such a hassle to continuously have to ask a member of the public to hold the door for me, I know firsthand that having to hold the door for myself is nearly impossible.

A lot of my social media following are wheelchair users, and have publicly spoken about some of the problems that they STILL have to face daily because of lack of accessibility.. these include:

Missing out on family/friends events because the venue hired is not accessible

Not being able to attend a concert/gig as the venue is not accessible

Struggling to open doors and navigate through narrow shopping stalls

Taxi/public transport not being accessible

Curbs preventing them from getting onto the sidewalk (no dropped curb)

These are just five of the many problems wheelchair users may have to face daily because of the lack of compassion from our local authorities.

In my area (Birmingham,UK) there is only ONE wheelchair space on our buses – and when I am using my wheelchair It’s always a worry I may have to wait for the next bus or even the one after that as there isn’t enough room for me because the ONE space may already be taken.

It seems common for local authorities to repeatedly ignore disabled peoples needs.

Personally In my home I have a walk in shower that has a seat – so my bathroom is called a washroom.

I have spoken to Occupational Therapists who have told me themselves that our local council in Birmingham SHOULD be building accessible houses with washrooms built into them, however they’d rather ‘save money’ and just put a simple bathtub in.

The problem is.. they are NOT saving money in the long run! Someone with a disability that is in desperate need for a washroom has to have their house adapted therefore scrapping the regular bathtub and THEN spending thousands of pounds converting it into a washroom.

I have a quote here from Mike Adams OBE:

“75% of disabled people and their families have walked away from a shop due to poor customer service or access issues”

75% is a huge number.. we have to change this, and we have to change it now!

If we all had a magic wand of course things would be sorted instantly, and the world would be equal and diverse for all; however as we know firsthand unfortunately that’s not the case.

I’m sure you’re all asking yourselves the same question – how do we change this?

If you are a venue looking to make your building more accessible for all, here is fantastic article that includes many tips! It’s so refreshing to see other people writing about the same thing and having the exact same end goal in mind.. to make the world a better place for everyone!

Here is the article: https://www.euansguide.com/news/top-10-ways-to-make-your-venue-more-accessible/

Top 10 ways to make your venue more accessible – Euan’s Guide

www.euansguide.com

Top 10 ways to make your venue more accessible 12/08/2015 facebook twitter google plus Email. Taking steps to make your venue more accessible is beneficial to …

If you are someone wanting to report an inaccessible building or an obstruction near you I suggest you contact your local council. You can do this simply by using google – for example my local council is Birmingham City Council and they are who I would contact in this situation.

Sadly, It’s not unheard of for local authorities to ignore complaints and if this happens to you I think it’s really important you contact your local MP (Member of parliament) or MOC (Member of congress) depending on where you are.

In my experience contacting my local MP really sped things along when I had a complaint about disability rights that was not being resolved! The day after I got my MP involved – I had an email back from the company that I was having problems with.

Please don’t forget to SPEAK OUT! We need to stick together and speak out against any discrimination that we as disabled people may face. Social media can be a brilliant tool for catching companies and the medias attention!

I’d love to hear your response to this article so please feel free to contact me and share your stories!

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She ALWAYS made it up the stairs

She ALWAYS made it up the stairs.

She was brought into our lives as a puppy to be both companion and protector. We decided on a Chesapeake Bay Retriever because, as usual, I researched the perfect dog breed for months and months. At the time, we had recently moved back into Ann Arbor and our house was right next to an area where petty theft was common. We didn’t want an attack dog, but I wanted someone who would let us know when an intruder approached and protect my family when I wasn’t there. I would love to say I was always there, but as a surgeon I was often faced with long and unusual hours. Chestnut was a beautiful dog by any standard having garnered her name from the color of her coat. She was also the toughest and most athletic dog we had ever seen, out jumping, swimming, and running every other dog, at every dog park we ever visited.

Chestnut was also the most stubborn animal we had ever welcomed into our family. She was so stubborn in fact, that when she was just over a year old we had to hire an animal behaviorist to help us learn from each other how to be a family. That said she became a member of our family, such so that our worlds began to weave around each other’s in the way that all of us do. You can’t make a plan as a family without considering all of its members and that is just how it goes and lest we forget as parents, we had three head strong children to remind us. At the time of Chestnut’s arrival our oldest daughter was nine, our middle daughter was seven, and our son was one.

Chestnut was indestructible till she was about 10. Prior to that there was no distance too far, no swim too long and no ball thrown too hard that she would not bring it back. In fact, we had to buy a special device and take turns throwing the ball to her as we simply didn’t have the fortitude to satiate her without it.

Through the years she walked with us, put her head in our laps when she needed something, looked at us with her quizzical eyes when we were clearly in the wrong or about to do something stupid. Our family grew up with her and when we moved to Seattle our yard was much smaller, so her needs meant twice per day we were taking her for walks. She loved the water so this day I think she was happiest of all us for the move to Seattle because despite the river that ran through Ann Arbor, it was no match for the majesty of galloping through the water in a shallow beach on the Puget Sound. Double Bluff on Whidbey Island was completely intoxicating for her. Although we weren’t able to go frequently enough to completely meet her desire, when we did, the joy as we approached would ripple through her body and reverberate through the car so that no soul within the vehicle was capable of being unhappy.

As Chestnut aged so did our family and as I stated above when she turned ten things went from full tilt athleticism to gradual decline. Over a fairly short period of time she went from unstoppable to barely making it up the stairs. Unfortunately, her arthritis was too defuse to be treated with a particular procedure so we were left with medications and trying to accommodate her. As I said above she was the most stubborn being we had ever known and despite purchasing a harness to help us carry her when she was having difficulty, over the three years we owned it I can count the times she actually let us use it on one hand. She was slow, but she never gave up, despite her clear difficulty she ALWAYS made it up and back down two flights of stairs every day.

With her arthritis also came an affinity for eating socks and on one fateful day she consumed my then 11-year-old boy’s knee high athletic sock with a speed and vigor I would have never thought possible. By the time we got her to the vet the sock that was now a softball unable to pass its way through her gut had obstructed and she needed emergency surgery. She did OK with the surgery but it was hard for her. We promised ourselves to try to never let that happen again so we cleared the main floor of all miscellaneous laundry and informed the kids that no one was to leave socks on the main floor. I know what your thinking, having teenagers to remember not to leave clothes lying around is like telling them not to eat snack foods right before dinner, it last for about a day then…. The only thing in our advantage was that Chestnut really couldn’t go up or down the house stairs by herself anymore, so we just had one area to watch out for.

As expected there were a few mess-ups, but no harm was done and at least she didn’t get a hold of anything she couldn’t pass. Being part of a family is a fluid thing and as one member’s needs change over time the family gives and stretches to accommodate. Just like work or school we get up earlier, we drive, we walk, we do whatever it takes to keep the homeostasis of the family unit. In Chestnut’s case it was her mobility. The price of living in the side of a hill is stairs and despite having our back yard renovated to help, there were still two flights of stairs. Three times a day we had to get her up and down the stairs. Twice a day she got her arthritis medicine, and throughout the day, as much love as possible. Despite her lack of mobility she would still have enough bark to warn off anyone, even though with one push she would be on her side. This also meant that the leash became a hazard to her falling down, so our walks looked more like the Beatles walking across Abby Road.

As with every story there comes an end and ours began with a typical Sunday morning walk, one of the first nice spring Seattle days in a very long time. Even though I was on call for the emergency room, I was able to sleep in, so after turning on the coffee maker, Sue and I got the dogs ready, Sue with Orion (our smaller King Charles Spaniel) and me with Chestnut and no leash. Aka George, Paul, Ringo, and John. As per usual after getting up the stairs (she ALWAYS made it up the stairs) Chestnut was done as we got around the block. So after doing her business I turned around to take her back so that Orion and Sue could have a longer walk. As we got home right after crossing the entry to the house, Chestnut, whom had seemed fine, before, puked all over the kitchen floor. She knew I was a upset as she waited till we had just entered the house to puke so instead of heading back outside as I tried to direct, she went into the living room where her bed was. Unfortunately, her bed was, unbeknownst to us, covered in puke and pee as it became clear chestnut was having trouble.

At this point Sue was home so we double teamed the clean up and checked out Chestnut who seemed fine other then puking and peeing all over the place. I called the emergency vet who advised us that if she was comfortable and had pooped this morning that we should give her a few hours to see if it was just something she ate.

Our complicated day was now more complicated, I headed off to surgery since I was on call and Sue took both dogs with her and the kids to run errands, one of which included looking at puppies for fun. My surgery, which was supposed to be later in the day, ended up being a little earlier so I was able to meet up with Sue and the kids and Chestnut, of course seemed to be doing fine at this point.

Denial is a beautiful thing, we all knew where this was heading, but she looked OK, so things were going to be OK. Chestnut had other plans. After getting Sue and the kids to the movies, where there were no cell phones, I came home to Chestnut puking up bile. So now, I am on call, Sue is unreachable and has the van (the only car Chestnut can get into) and her harness. So I look at Chestnut who can now no longer swallow her own saliva and we decide she has to go to the vet now. Chestnut takes a long time but she refuses help and makes it up the stairs, because she ALWAYS makes it up the stairs. She limps around the garage with me and we both look at the back of our Kia Soul. As I have stated before, she hates being picked up. In the corner of the garage is a ramp we brought 3 years previously that she also hates which is why its covered with cobwebs in the back of the garage. Not knowing what else to do, I got out the ramp and put down the seats for her.

I am not a particularly spiritual/mystical person, but as you can imagine events were moving forward in a way that I had to accept seemed to be predestined. After putting down the ramp instead of refusing to go up the ramp, as she has done every other single time, she very slowly begins walking up the ramp. After getting into the back of the car she lies down and looks at me signaling its time to go.

Twenty minutes later we are at the vet and I am considering how to get Chestnut out since the ramp was too big to fit in the car. Sometimes I am such a dumb ass, I knew this was going to happen, but now it’s upon us and I didn’t have an answer. Chestnut looks down at the drop to get out and we both know its not happening. Before running in to get help she looks up at me and I know she is OK with me picking her up. I know that sounds weird, but you would have to know Chestnut. She actually lets me pick her up and carry her to the front door.

Nobody who is in the emergency vet’s office on a Sunday afternoon is happy, but its quiet enough that no one is overwhelmed. I am terrified that my pager is going to go off and thank goodness they get us back to talk to the vet quickly. Chestnut looks pretty good, but the story is bad for a possible obstruction even though we never saw her eat a sock or anything else for that matter. In my heart I know that is what’s going on, but the vet appropriately wants an X-ray.

This is one of the moments in life when you appreciate how fluid time is, watching a great movie or reading a great book, hours pass by like minutes. Pacing in a ten by ten vet’s office, minutes feel like hours. By the time the Vet is back my mind has wandered so far I am startled by the knocking on the door. As expected she has a complete obstruction its either emergency surgery or euthanasia. Chestnut is going down hill quickly.

Sue is out of reach with no cell phone, so this 48 year old dude does what any son would do in a similar situation, I call my mom. No matter how old I am I will always be my mother’s son and despite being a surgeon making difficult decisions every day I don’t feel silly for a single second calling my mom. It helped so much to talk with her. I knew I couldn’t make this decision without talking to Sue so I asked the vet to give me a little time. There is one thing I left out earlier, Chestnut had oral surgery about one and half years ago to remove some bad teeth, and it was sooooo hard. Sue and I didn’t think she would make it after that and we promised her and each other that we would never do that to her again.

The thing about making promises like that is that it’s easier to say it then it is to do it. How do I make the decision to end a life? The Vet was wonderful and supportive, but….

Finally, I got to talk with Sue, my wonderful wife, Chestnut had been her protector for her entire life and no one knew Chestnut better then she did. Thank goodness I married her, we both knew Chestnut didn’t want this anymore. Chestnut told me in the car, I know it sounds weird, but you weren’t there….

I told the vet what we thought Chestnut wanted and she brought Chestnut in so I could wait with her while we waited for Sue and the kids to come see her. As I am writing this I can feel her head on my leg looking up at me with those beautiful eyes. Stupid blubbering dad and she was the strong one letting me know it was OK, she was tired.

No dad wants to see his family crying, but after being with Chestnut by myself for several hours I couldn’t remember more relief in seeing them. Sue and the kids kissed her gently and we sat with her till she lay down and made it clear she was done. My thoughts had always been that I was going to let Sue and the kids go while I stayed with Chestnut, always the dad wanting to protect them from a negative experience. Except that my son, who had grown up with Chestnut was not having it, he was going to stay to the end with every minute of his 14 years to bear on this decision.

I sat on the couch and he sat on the floor with her. The kind vet injected the anesthetic into her intravenous line so she would go to sleep and not feel anything. My son bravely sat with her, and before going to sleep Chestnut got on her haunches while the medicine was taking its affect she laid her head in my sons lap. As Chestnut went to sleep for the last time resting on my son he looked up at me and said, this was on her terms dad, She ALWAYS made it up the stairs, she ALWAYS made it up the stairs. I don’t know that I have ever cried as hard as that or felt more sad while feeling more proud of my son. I know there will be other moments in life that will stick with us and define us, but I will NEVER forget those words from my son.

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Cut off your nose to spite your face

Cut off your nose to spite your face

This is a phrase whose origins began in the 12 Century, but has evolved to be an idiom meaning a needlessly self destructive over-reaction to a problem. We used to use this phrase when I was a resident in surgery describing people that refused to see the right or easy was to solve a problem because they were so sure their way was the right way no matter what.

I am bringing this up because I don’t feel there has been a time in American politics has this been more applicable. While reading the fallout from the GOP’s new health care plan that passed in the house I have been listening to news all day. In addition, reading non-partisan reports (specifically by the Kaiser foundation) has got me thinking.

The question posed by many is this. Why would our representatives pass a bill that most American don’t want. I know there are people out there who want this, but the majority don’t. This is a bill that by all accounts will leave millions fewer insured and preferentially, hurt the poor, elderly and disabled. I say “by all accounts” because they passed this before it was even reviewed by the Congressional Budget Office (CBO)?

Before I continue with my diatribe I need to give two disclaimers.

One, I was in private practice when the affordable care act was first announced and as a small business owner I was vehemently against many of its provisions, I saw this so you know I was not someone just drinking the cool aide to begin with.

Second, until my daughter who happens to have Down syndrome got to the age that she HAD, to apply for social security and medicaid (yes she had to) I had no idea of the extent of the programs run by medicaid that had to do with my daughter’s independence. Programs that not only had nothing to do with her healthcare, but programs she would not have access to without out medicaid expansion irregardless of how wealthy she was or who her parents were.

Back to our discussion, why? Why pass an unpopular bill that hurts more then it helps. Why not just try to improve the parts of the affordable care that don’t work instead of getting out the congressional eraser and making it go away, then try draw a whole new plan together.

Then it came to me, this wasn’t about making it better, this was about repealing the affordable care act so they can do what they said they can do. This was the classic mistake egotistical people make when they think they know what is right no matter what everyone around them says. They are willing to cut off there nose despite their face irregardless of the consequences because they have to prove they can.

The answer from many in the GOP (not all) is that they are giving their constituents what they promised on the campaign. Things change! Just because you promised your kid a kitten doesn’t mean you still get them a kitten when you discover they are allergic to cats and by doing so you will make them very sick. As parents we have to make judgements when circumstances change, and yes it sucks but its a hard job.

What disturbed me even more was when congressmen from our state voted for this bill knowing that it would adversely affect their family. One in particular from the state of Washington who has a son with Down syndrome voted for this bill knowing that it would adversely affect her sons ability to have an independent life whether she was a congress person or not. Choosing political future over the well being of a family member Who does that?

I was buoyed by another congressmen (Dave Reichert) only a short distance from the aforementioned person who is also a member of the GOP who has no personal connection to someone with a disability (that I know of) said this before voting no:

“Over the past several years, I have been committed to fixing our current health care system to increase choice, reduce costs on Americans, and allow families to access the care they need. I have also remained committed to protecting the most vulnerable in our communities, including children on Medicaid, people with preexisting conditions, and older Americans. These have been and continue to be my priorities for health care reform. Unfortunately, the current House bill falls short and does not provide the essential protections I need to support it.

With all of the political banter surrounding this bill, it can be difficult to remember that this decision ultimately comes down to people. We need to know our loved ones can get and afford the care they need, regardless of age, income, or health status. And we need to know that changes made by our government, even to a failing system, will not leave our friends, families, and neighbors worse off. I will continue to work with my colleagues on both sides of the aisle to fix what is failing and make our current system work better for American families.”

The other GOP congress person from our state Jamie Herrera Beutler from Washington voted against it for the same reasons.

We are at the point where people who are presenting us have become so egotistical that they are willing to hurt people just because they are so compelled to repeal “Obama care” no matter what just because they said they would?

I am writing this for my own therapy, because I don’t want to ever be the person who walks past the accident and doesn’t lend a hand, or sees an injustice and lets it slide. There are wonderful people in the GOP as well as the Democratic party. This is not a political statement in that I believe the GOP is wrong. This a statement about human nature. Sometimes power corrupts and if you are making decisions that negatively affects millions of people so you can show that you can do something you said you would then I only hope you have done us all a favor by showing us your true colors so that we can affect a change before its too late.

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I didn’t know you could learn something from a comic book!

“I didn’t know you could learn something from a comic book!”

Those are the words my beautiful young lady told me today. As most of those that follow us know, I have written several books trying to use fiction to teach lessons about inclusion and diversity. I know it’s not a new concept, but we all have to have that mission that drives us to be better. For many of us that mission begins when we have kids and as I have stated before, my family is what drives most of what I try to accomplish in this world.

One of the lessons I have learned trying to advocate for people with intellectual and developmental disabilities is that no matter how well intended I might be, my message doesn’t always make it to those who matter. I have found that it’s not just a matter of marketing, but writing something that is age appropriate and attainable to everyone is a challenge. My latest project has been intended to help with that.

Eximius was intended to be a story that is fun and attainable for everyone. I say intended because I fully realize that good intentions don’t always equal results. After years of good intentions I am still striving to be better. In science (and in life) a theory is just the start; proof is something that comes after all of the work is done. I have been operating on the last three years under the theory that if I make a graphic novel, I can make something with a message that is more visually appealing and attainable for different reading levels.

I always thought this was a good idea, but yesterday I got confirmation. Literature is something that I am passionate about and our house looks like a used bookstore as a result. I try no to push things on my kids, but I can’t help trying to get them to read.

In my humble opinion, any reading is good, a great novel, a magazine article, the newspaper, a graphic novel, anything the keeps your brain working. People will argue that a graphic novel makes you use less of your imagination, but I would rather my kids do something enjoyable with their brain reading than nothing at all. In addition, there are some truly amazing graphic novels out there with great art and a great story that make me think as much as any novel ever has.

In an effort to get my daughter to read more I have thrown novels, magazines and graphic novels at her for years. I finally found one I thought she might do more than smile at me and leave somewhere in her room. A marvel graphic novel called “Ms Marvel” its about a Muslim teenager who gets superpowers. It’s not just a superhero novel but a statement about acceptance and diversity. Devon read a little bit of it and actually decided she might like to read the rest of it.

Six hours later Devon has finished the graphic novel with a smile on her face asking if we can get more of them. Being the crazy dad I am, I restrain myself enough so that it isn’t obvious that I want to run out and by them all right now. Then I hear “dad, can you learn something from a comic book?”

I know it doesn’t seem like much of a blog after a lot of the other deeper stuff that’s out there. Here is the deal, to be working on something you hope will be worthwhile under a premise that has not been proven. To believe you have a chance, and then be validated by your beautiful daughter is something that is hard to put into words. I still don’t know what is going to happen, but at least I know I am heading down the right path. Thank you Ms Marvel, every little bit counts I am very thankful for your message its being heard and I only hope to continue your work with my message.

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OMG

OMG

I knew my daughter and her friends were awesome, but I had no idea just how awesome until today. Devon, my 20-year-old awesome girl who happens to have Down Syndrome, goes to Highline College as part of the Achieve program. The Achieve program is a post high school education program for people with intellectual/developmental disabilities. Devon rides her bike 2 miles to the light rail, rides the light rail for 40 minutes then takes a bus 15 minutes, each way, every day, totaling about 90 minutes. She tripped running to get across the street last Tuesday trying to catch the light rail breaking her ankle. She didn’t know her ankle was broken, but she was with her so called “disabled friends” who made sure she was safe, and helped her get all of the way home and got a hold of my wife to make sure she didn’t have to try to ride her bike home. They were a platoon of friends who knew exactly what to do, elevation, ice, help, who to call, they were even prepared to call an ambulance.

I was so impressed with how her friends had come to assistance. I think most people would give anything to have friends like that. Nobody lost their cool, I just couldn’t get over it.

Devon then had an increasingly tough week, finding out that her ankle was broken and she couldn’t play soccer of even walk on it for at least a month. The week continued to get worse as she woke up with calf pain and developed a blood clot which kept us in the emergency room all day and she is now on blood thinners.

After all of that, it is now only Monday of the following week and she has class. So what does she want to do? Go to school! Seriously she wants to go to school. Not only that but she wanted to try her usual route to see if she could do it. This is her last quarter, if she can finish she will be done and she doesn’t want to give that up.

After much consternation my wife and I agree that I will go with her to see if it is even doable. I have not done the entire commute with her and I can help her bail if things go south. I also thought I could help problem solve to see if this was going to work or if she was done for the quarter.

Sue dropped us off at the light rail (even we thought the bike with a cast was a bit much) and we began our Journey. It was awkward getting on the light rail but was set up to allow wheel chairs and bikes so it really went pretty well. Then a part I didn’t realize, she has to get off the rail and walk a block, or now scooter/crutch a block, and wait for the bus after crossing two four-lane busy streets. The bus lowers a ramp and the bus driver kicks people out of the disability seating so Devon can board.

The hardest part was her college campus (after walking a block from the last bus stop) nestled in a Seattle hillside, Highline College is frankly not very accommodating to people with physical disabilities. Here is where the journey gets even more interesting, Highline isn’t exactly small, but we don’t go anywhere where someone doesn’t give Devon a shout out and help us to the safest route. The access people from the college gave us directions to the safest route utilizing an elevator. However, the elevator was broken and the college staff had no idea what we should do. So who should help but one of Devon’s friends who happens to use a wheelchair, that tells us about the safest way and that the elevator has been broken for a while. Dotted along our route are people saying hey and can they help.

We finally make it to lunch as I brought a good book and get caught up on some nice reading while she is in her classes. Now I am observing Devon at college with her friends all of whom are volunteering to help and discussing their classes, work, you know, normal young adult stuff. After lunch its time to go home and I am dreading this trip home. It frankly sucked, not because I am helping Devon, it just sucked.

I am writing this because I am so humbled. First, that these kids do this every day without complaining, ever. It’s not just Devon, but at least 6 of her friends that make similar commutes. Second, trying to navigate the world in a wheelchair is possible, but it is so hard I really thought I knew, but man, doing a commute like that with a physical disability (which a lot of people do) it takes a whole different kind of fortitude. Lastly, friends, oh man, OMG I don’t know how many people have friends like that, but I hope everyone does, because how the heck do we get through life without that. You also have to know, that all these kids Devon knows are kids/young adults that she has just known the last few years. That is just who they are, genuine people who mean what the say, know right from wrong. They live their lives as they think they should with no ulterior motives. I am so humbled and hopeful for the future of our world knowing that there are souls like this out there.

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Inspiration Perspective

Inspiration Porn

I have danced around this saying since I started this work several years ago. I have decided to post something about this since I have been questioned on social media and cautioned to make sure what we are doing with the #SuperheroLikeMe project is not inspiration porn. I have to start by saying that as a caucasian male there are certain things in life that I will never experience. I can empathize and try to understand, but I will never know what it is to be a person of color applying for their first job. There are things that my daughter Devon experiences every day as a woman and a person with Down Syndrome that I will never experience. So that is my disclaimer, I write this as a white dude so that other people who are outside the looking glass might be able to see a little clearer. My sincere hope is that I can put this in perspective to those who don’t really understand. So this is not a post really intended for people living it, more for those who don’t understand why people living it might be upset by someone congratulating a person in a wheelchair for being awesome getting into their car.

The person we talk about most when thinking about inspiration porn is Stella Young. She was an amazing young woman born with osteogenesis imperfecta, who was in a wheelchair and really coined the phrase ‘inspiration porn’. Unfortunately she left us in 2014, but she left us much to think about, specifically, her Ted Talks: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much

I have tried so desperately to understand inspiration porn, that I sometimes feel I go the other way. I know when Devon was young and I saw those stories about the kid with the disability running in the touchdown on the last play of the game when there team is up 5 touchdowns and the other team stops playing so he can run it in. I shared and cried till I realized the purpose was for everyone else to feel good. Not that the kiddo didn’t have fun, but that wasn’t the point. If someone congratulated me for being able to get into my car without help, I would wonder, “Is this some kind of sick joke?”

Celebrating someone for their mere presence is insinuating that there worth is dependent on you. Allowing someone to achieve, or fail, irrespective of what you think, is treating them as an equal. I always think about definitions when I try to explain this. Tolerance is permitting someone to be in your presence with no acknowledgment of their existence. Acceptance is acknowledging someone’s existence, but not expecting anything of them. Inclusion is expecting that person you have accepted to want to do things and treating them as such.

Respect is not the same as pretending to be inspired by someone’s existence. I have tremendous respect for my daughter’s ability to work incredibly hard for things some people find easy. I am inspired by her passion, her ability to try harder than anyone I know to achieve her goals. She is an adult woman, with opinions and challenges that I will never understand, but will always respect. Don’t applaud people for existing, respect people for living their lives. Expect people to have hopes and desires just as you do. Allow people to succeed or fail regardless of what you think they are capable of.

I want to now include a quote from Stella’s talk;

“I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a 15-year-old girl sitting in her bedroom watching “Buffy the Vampire Slayer” isn’t referred to as achieving anything because she’s doing it sitting down. I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people, and I want to live in a world where a kid in year 11 in a Melbourne high school is not one bit surprised that his new teacher is a wheelchair user.”

To see the world as we should, sometimes we have to accept our own biases. If we don’t accept that we cannot possibly understand everything everyone is going through, we will never listen to them. If we don’t listen, we don’t learn, and for someone to not learn something every day of their life is tragic. Inclusion allows us more opportunities to learn understand and grow. Inspiration porn is discrimination that is sugar coated in a way that makes us feel good. They are hollow calories that should not be consumed.

Embrace your own flaws and learn from those around you. You can’t learn if you don’t listen. If there is one take away from this blog post it is Stella’s last words from her Ted Talk.

“Disability doesn’t make you exceptional, but questioning what you think you know about it does.”

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Friendships, Relationships and Disability

Friendships, Relationships and Disability

Hey there everyone! Today I’m going to be talking about friendships and relationships when you have a disability. I’m writing this post for the lovely people over at Eximius Novel – I thought this was a great subject to cover for all of you guys to enjoy.

Please note that all the experiences I speak about here are my own and I am NOT speaking for other disabled people! Just myself.

Friendships
For me, making friends as a child actually wasn’t difficult.. I was quite confident and didn’t think about my disability at all, I was simply just like every other child as far as I was concerned.
I have many fond memories of friendships from when I was very young and I was so happy and carefree that I didn’t get offended or feel awkward at all when my friends would ask about my prosthetic leg or my missing pinky fingers.

I actually found it quite fun explaining my disability to friends when I was younger – I do remember being about 6 and telling some friends of mine in the playground that I was disabled because a witch from a storybook had put a spell on me!
It was so funny because we all created a game from it afterwards and it was so much fun.

As I got older I started to suffer from low self esteem which made me struggle very much to accept the fact I had a disability.
As you can imagine this made making friends complicated because I was always worried that they wouldn’t accept my disability, or that they’d find it weird or think that I was a freak.

Of course this was all just in my head, but I found it really difficult to approach new people and make friends because of it.
What actually happened was that I’d eventually have to speak to the new people; and to my surprise we’d get along just great!

Nobody I’ve got to know has ever been rude or called me names because of my disability – to friends and family it’s just who I am.. It’s just Amy!
I don’t know why I’d ever think people would care about my disability, I guess that’s what low self esteem can do to you.

I have had many positive friendships and what I’ve learned is that most people really only care about what’s on the inside.
If you’re a good, kind person.. you will be loved! Real friends don’t care about things like disabilities at all, It’s just a part of who we are..Many friends have actually said it makes me more interesting!

Me and my two cousins!

Relationships
I have to be honest, I am only 20 years old and I don’t have a ton of relationship experience at this age but what I do know and have learned I will tell you! :)
I am in a long term relationship and having someone that loves you for exactly who you are is the most amazing feeling in the entire world.

As I was suffering with my low self esteem, telling my partner about my leg when we very first met seemed like the most daunting thing in the world to me. I was having all sorts of thoughts like “Will he still like me?” “Will he be put off me when he finds out about my prosthetic leg and missing fingers?”

Once I had told him he let me know immediately that it didn’t change a thing.. he was just really interested and concerned about how it had happened and he was also very sorry to know that I was so self conscious about it; so much so I thought it would change his opinion of me.

I can’t even begin tell you how much of a relief it was to learn that my disability wouldn’t be affecting my relationship; I remember thinking as a child that nobody would want to marry me because of my disability.. this was once I’d started to learn that I was different and I’d started comparing myself to other girls my age and realizing my body was totally different to theirs.

It’s safe to say that my disability does not affect my relationship in any way.
I remember being so nervous taking my prosthetic leg off in front of my partner for the first time but it just felt totally natural and he didn’t even look twice.. It just does not bother him in any way at all.

My cousin, Me, and my other cousin!

I really hope this is the type of positive experience that other disabled people have had in their own personal relationships, I know that I’m very lucky to have the amazing partner that I do but I truly can’t imagine anyone on earth mean enough to judge someone because of their disability at all.
Either way – I’m sure those types of people exist and they are truly not worth our time.

If I’ve learned anything it’s that the best kinds of people will love you no matter what difficulties or disabilities you have; It’s such a ridiculous worry to have looking back now that I’m quite confident.. I can’t believe I ever thought my partner or my friends would care about my leg or missing fingers at all – I feel so silly for feeling that way in the past. The people that deserve to be around us will know that our disabilities are just a natural part of who we are.

Just like I have brown hair and blue eyes, I also have 8 fingers and 1 leg. It’s just ME! everyone who loves me and cares for me knows that and doesn’t care in the slightest. I know this because I’ve been told many a time by my beautiful family, friends and partner that they wouldn’t change me for anything – and I believe them.

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Investment Happiness

Investment Happiness

April is often the month of fundraisers, banquets and silent auctions. Over the years we have gradually increased the number of organizations we support and thus find our weekends full. This weekend was a particularly long weekend. My wife and Devon spent the entire week in Washington D.C. lobbying for disability rights and inclusion, leaving me to work as a single father most of the week. Fortunately, our youngest is pretty independent, but still. After a week of less sleep and surviving, my lovely wife is back in town only to find out we have a weekend full of obligations. For those of you who may not know me, one of my least favorite things to do is dress up to go out to a fancy dinner.

The funny thing about these banquets is that I always lament going till I am there. Saturday was just such a day. You know how it goes, bad weather on your day off, day goes by quickly and before you know it you have to get dressed when all you want to do is finish your book while it rains outside. To make matters worse imagine getting stuck in traffic on the way, then getting hopelessly lost in the underground parking lot.

One of the hardest things in life is to stay in a bad mood when you are surrounded by people that are happy. I don’t mean happy in the sense that they just got out of a movie they enjoyed, but genuinely happy in a way that if you turned out the lights and couldn’t see a thing you would still know how happy everyone was. In my world I am Devon’s dad, my role is to float along and introduce myself while everyone marvels at how amazing she looks in her dress. No one loves dressing up more than Devon and tonight she was wearing her frilly Bell dress that was impossible to ignore. After a few minutes following Devon around, it was easy to forget I was in a bad mood.

Sometimes the road to happiness is a bumpy road with lots of turns, so after being elevated in my mood I was brought crashing back to earth by subject of our banquet. The ARC of king county is an amazing organization, but talking about the woes of Washington State’s education problems, affordable housing, and employment, my depression was deepening. The ARC is working tirelessly to make a difference and one of the stories was about a woman with an intellectual disability that lost her home and was homeless for two years. She came to the ARC and after much work they were able to get her back in a place to live and off the street. So the roller coaster of emotions continues and I find myself surveying the room. The topics are serious, but people are so happy, it’s not that they don’t understand the importance, and in some cases dire nature of the subjects, they are just able to enjoy the moment, the party, the people.

As I have posted before, it is sometimes hard not to get despondent about our progress with regard to disability rights and civil rights in general. My daughter is human, and a very emotional one at that. She gets upset about things, but is always able to enjoy the moment. Most of the people at our banquet were happy and enjoying the night. That night, your bank account didn’t matter; your job didn’t matter, just being here for a good cause mattered. I looked at everyone having a good time and realized that this was a reciprocal relationship. The volunteers and donors were here to give to something they believed in. People who are part of the ARC are happy because of the party and that they are being celebrated.

Before I finish my point I want to be clear giving money and support to something you believe in is not inspiration porn. Liking a post on Facebook or Twitter is not the same.

I have always said that my kids bringing me happiness and I know that Devon in particular is able to find the good in things that I struggle with, but after dinner I was convinced just as inclusion in the classroom was good for everyone’s education. Inclusion in life and supporting others is in our DNA. Being the crazy surgeon I am, I researched it, and interestingly enough there was a published article in science (Spending Money on Others Promotes Happiness

Elizabeth W. Dunn, et al. Science 319, 1687 (2008); DOI: 10.1126/science.1150952) showing that spending on others does make you happy.

Its been shown time and time again that once our needs are met, more money doesn’t necessarily make you happier. People who get an unexpected windfall of money who spend it on others are happier. There was no advantage to spending it on yourself if you measure happiness as your endpoint.

Having spent most of my early life spending every waking moment trying to be a surgeon, I am at a point in life where I can appreciate that the road to happiness is not only something I don’t always understand for myself, but is different for everyone. One thing I do know from every fiber of my being is that no matter where you are in life supporting someone or something you believe in is good for the soul. No matter how much I don’t want to put on my suit and go to a fancy dinner, I always felt better about my life afterwards. Even on days when my day job gets me down I know that my day job helps me have moments like I did this weekend. Support is a two way street, the people you support give back in ways that you can’t always see, but always feel.

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Eleanor’s Leadership

It is sometimes hard to predict what inspires us. After a week of depressing news about how our world is slipping from the path of inclusion and acceptance I find myself asking: what can I do to make this world a better place for my children? People are looking at the world right now in a very narcissistic way. My future, my job, my house I don’t have, what I want now. The culture now reminds me of one of the things the purportedly differentiated the Japanese auto makers from the US automakers in the 80’s and 90’s. Looking at quarterly profits vs a ten-year plan. Setting the foundation for a long-term investment vs what can I do now to maximize what benefits me. I can’t pretend to know if that was, in fact, true, but it represent an ideological paradigm of delayed gratification for a long-term future vs a narcissistic approach to instant gratification.

This is important because countries and people across the world are seemingly thinking more in a nationalistic way as opposed to global wellbeing. Case in point is the roll back of EPA regulations. Why invest in something now that will take years to make a difference when we need jobs now? You can just as easily ask the question, why leave my money in the bank when I want a new car now? Protecting the environment is an investment in our kids future, not our own, it’s not tangible and is only meaningful if we are not so narcissistic to think that it matters.

I use these as examples so that we can examine human rights in the same vein. Repression, and discrimination robs us of our future and those of our descendants. We ignore the possibility of a better future by scaling back on the progress we have made towards a more diverse, accepting society. The United States was one of the original nations to push this agenda of Human Rights on the United Nations. In a time when the world was more divided than ever, after World War II, Eleanor Roosevelt was a voice the world listened to. I don’t want to pretend that the US was all wonderful. Everyone who has watched “the Help” or knows that the average life expectancy of someone with Down Syndrome in the 1970’s was in the 30’s knows that our very recent history was terrible by many accounts on the subject of Human Rights.

This is where leadership comes in. Great leaders don’t just complain about what is wrong with the world, they don’t just push buttons and blame others. Great leader raise us up, they make people believe that we are capable of more. In a perfect world this means everyone. I don’t mean this as an ideological statement on political beliefs; this is a statement of inspiration. Parents model good behavior. Your children will do as you do, if you tell them to be good but continue to set an example contrary to your words, they will emulate what you do. Leadership is a form of parenting, and great leaders understand that.

Eleanor Roosevelt understood this. Even during her husband’s term she worked tirelessly to help the disenfranchised and bring inclusion and acceptance to a White House that was under siege from some of the more difficult times in our history. After his death she continued her work and in 1946 was appointed as a delegate to the United Nations. She was appointed head of the Human Rights Commission and thus was instrumental to the formulation of of the Universal Declaration of Human Rights. She submitted it to the UN assemble with these words:

“We stand today at the threshold of a great event both in the life of the United Nations and in the life of mankind. This declaration may well become the international Magna Carta for all men everywhere.”

If you want to review the 30 Articles from the Universal Declaration of Human Rights its summarized here: http://bit.ly/1lXHrpz

For Eleanor Roosevelt it was not just her moment at the UN, but her style. One thing that I think many of our current politicians could learn from her was her willingness to do what was right even in the face of pressure from forces in our society that may say otherwise. I think this is characterized in her quote:

“Do what you feel in your heart to be right—for you’ll be criticized anyway. You’ll be damned if you do, and damned if you don’t.”

For more info you can check out http://www.humanrights.com/voices-for...

One person may not be able to change everything, but one person can set the example. At times like these we need leaders to help us begin the journey, not to use hate and diversion to force us on a path of fear. A leader can be anyone with the heart and courage to make a difference. Titles and political appointments don’t make you a leader. I wrote this today being inspired by Eleanor Roosevelt’s words. We have cell phones, computers, and apple watches, but we don’t have inclusion and acceptance, at least not everywhere.

No clichés today, just hope. No matter what’s going on we have to have hope. Hope is our time traveling superpower. With hope we can accomplish anything, without it, nothing.

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The Battle for Healthcare @ChrisDisablity

Recently, there has been a lot of talk about healthcare because of President Trump and his proposal to repeal the ACA. If you were to search your favorite social media for hashtags (you may know I prefer Twitter!), you’d be inundated with them #SaveTheACA, #SaveMedicaid, #Trumpcare, #KillTheBill, and many many more.

Now, I could write a post solely about how Medicaid, we call it AppleHealth in Washington, significantly improves my quality of life, or that I’m thrilled #KillTheBill happened and we live to fight another day, but I won’t. Like most disabled people, it is a big deal to me to have access to this. With AppleHealth, I have the ability to go to work and live independently. I don’t have to worry about dying from lack of access to mental health medication and counseling or asthma medications and treatment to name a few.

I’m not here to argue that the ACA is perfect – it’s not, but it has done a lot of positive things for people. If you aren’t already aware, prior to the ACA, myself and as many as 129 million Americans could have been denied coverage simply for being born – in my case with CP -, having a baby, or past struggles with addiction. If you are someone who has minor medical needs like seasonal allergies/hay fever, or a sports injury, you could have faced increases on coverage. You could have even faced barriers to insurance coverage because of your occupation. Not needing to worry or think about changes in coverage cost for those types of little things is a bonus to what the ACA has done for the number of insured Americans. However, let’s look at this from a different perspective; let’s say you’re a healthy 20-something male making over the Medicaid cap and buying insurance. The ACA can be a bit of a nightmare for you. In the early days of the ACA, my significant other went from paying approximately $100/month to $200/month for a “catastrophic” plan. His situation is different today, but at the time, he had an attitude that many who don’t see the disabled side do – why pay for this, why not just get penalized – I don’t need it. Today, he has AppleHealth, a pre-existing condition, and takes a medication that was denied coverage prior to ACA. We worry about our futures without AppleHealth. Our stories are not unique. All you have to do is search #SaveTheACA or #SaveMedicaid to see more. Within the last year, Washington State enrolled almost 23,000 people in AppleHealth coverage, and likely a chunk of them have pre-existing conditions. Beyond shining a light on the impact of the ACA, I want to discuss a part of this conversation that is rarely mentioned; life before this dialogue on healthcare began, and the impact these conversations have on people’s lives.
 
I’m not ashamed to say that looking back to just before Election Day, was probably the first time in the last few months that I’ve not felt a tremendous mental weight about politics and the future. Maybe the worst part is, I know so many people who feel the same way. Especially and particularly, if you’re disabled. Being #DisabledAndUnashamed has been a part of my life for a while now, but I’d still love to not need to wake up again and be consumed by politics. But, as a person with a disability in this society, I’m not sure what that feels like anymore. As the results were coming in on election night, I started bawling and having panic attacks. It was at that point I began taking a lot of deep breaths, made cookies, did a wordsearch, and, eventually, turned it off. The more results that came, the more anxious I got. It was the first time in my life that I’ve ever genuinely felt at risk. As you have already read, most of my fears do come down to healthcare and the role that plays in my life, but it goes beyond that. I wear many hats; I’m a woman, a student, an immigrant/naturalized citizen, don’t have a lot of income, and have a preference for working with needy children who usually live chaotic lives and worry about things nobody (especially a child) should. The election of Donald Trump felt like a potential assault on everything I love and live for. Since that appears to be holding true thus far, I wake up most days absolutely consumed by politics. The past few days, I’ve dreaded going to bed because I didn’t want to wake up to find my healthcare gone. When the initial immigration ban occurred, I was anxious at the thought of losing my citizenship or being treated differently by officials – and I’m a white British born American who has called the Seattle area home twenty years. As a woman, I worry about access to women’s healthcare in particular, which I need to survive a disabling medical condition, but also about my rights in general. The student in me worries about loans, and the educator in me can’t bare the thought of student teaching while Trump is in office and have to hear my students are afraid or bullied because they’re undocumented. Finally, as a disabled person, the fact that the ADA may be gutted is almost too much to bear.

Almost everywhere you look, you’ll find discussions of the physical costs of the ACA. Some, like me, benefit from it tremendously; the average person may just see it as an expensive, useless thorn in their side. The solution here isn’t to repeal and harm 24 million Americans who will be left uninsured, nor is it really to make costs go through the roof for those who, at this moment, don’t need it. Healthcare in the United States needs to benefit everyone. I wish there was more discussion on the mental effects of life with Trump. I’ve become very grounded and strong in my mental health, and am better equipped to handle the stress of so much (political) uncertainty. I make sure to take the time to talk about how I’m feeling, check in with friends who I know feel similarly, and use plenty of healthy distractions like reading books, making beaded braided bracelets, listening to music, or coloring. Had this happened a few years ago, I wouldn’t be able to say that. I’ve learned that self-care isn’t selfish, it’s survival, and sometimes taking time away is what it takes to get up and fight tomorrow. So, for now, we’ve saved the ACA, but at what physical and mental cost?

As for the next few days as we move forward, I plan on doing some self care, and working with local organizing efforts around disability and healthcare. As of my writing, there is a group meeting tomorrow on this very issue – https://www.facebook.com/events/119576101906420/, and I am happy to follow up with anyone interested in getting involved, and you can always find me continuing this conversation on twitter.000000

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