Sean Adelman's Blog, page 2

Amy’s superpower #1

I have a secret super power, but I’m not going to tell you what it is, you have to read the whole story to find out. You may think its obvious, I do have a special condition called proximal femoral focal efficiency (I know right!), Its to hard to say that all the time so I just say PFFD. It means one of my thigh bones, the femur, didn’t grow as big as the other one so its like I have one and half legs instead of two. Anything less then what most people have can be a pain, especially when it means you have to have several surgeries so that you can walk with an artificial leg. When you start life with something different its only different to every one else, for me, its just me. My normal is putting this thing on that looks like a leg so I can walk without crutches or a wheelchair. Just like you put on sneakers to play basketball, I put on my leg.

Most of the time I am just me and I don’t think about it, sometimes I can’t do things as well as other people and it makes me angry. My stupid brother is always faster then I am and always finds me when we play hide and seek. It takes me a little longer to find a hiding place, so there’s that. It is also really hard to be a stealth ninja with an artificial leg. I am either clumping around like a pirate or making noise with my crutches (I can’t really play hide and seek in our house with the wheelchair very well, but I’m working on it). My brother also thinks he is smarter then I am. I let him think that because he is an annoying little brother, but everyone else knows better.

When the weather is bad its hard to find fun stuff to do inside. Our house is cool with all kinds of places to hide, but its old so everything is loud . So I always lose.

Today is going to be different, remember how I told you I have a secret super power, and I am smarter then why little brother! It was rainy outside and mom and dad didn’t want to go anywhere so my bother says. “Why don’t we play hide and seek?”

I know he likes playing when its just me because he likes finding me quickly then pretending to chase me while he makes fun of me. I know it sounds sort of mean, but he is my brother and I’m sort of used to it. Anyway, back to the story.

So today was going to be different, I didn’t even try to stay quite while he counted.

“1…2…3….4….”

I went up stairs into mom and dad’s bedroom. They have one of those tall beds that they some times stick storage containers under and big walk in closet. I never hide under the bed because it a pain and hard to get back up, By the time I am on the floor and sneaking under the bed my brother is already in the room and catches me with my leg sticking out. Then he usually tries to sneak up and grab me even though I can hear him he is too fast and grabs my leg while taunting me. “too bad, so sad.”

“10…..11……12”

I am quick, today is going to be different. I know I was quicker today, but that meant I wasn’t quiet so he will have a good idea where I am hiding upstairs.

“18….19……20 Ready or not here I come.”

He is too slow today I am completely hidden, He, he, he….

I can hear him running up the stairs

“you are sooooo loud I am going to catch you the fastest ever.”

I can see the door from where I am hiding, there is no way he is going to find me.

He bursts into the room. “See I told you there is no hiding from me. I can still see you. You are the worst at this game.

How can he possible see me, hmmm….

He walks over to the bed and grabs my leg “got you”

Then he is silent for a second “wait, what?”

I am giggling so hard my whole body is shacking.

“Amy, where are you, what the heck?”

I peak between the doors to the closet and there is my, not as smart as me ,brother holding my leg up. Except, I am not attached to it. You see! My superpower (I should say one of my superpowers ) is that I can be in more then one place at a time. My parts are detachable, he, he, he…. He had no chance against my evil genius.

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Confusion

By Sean Adelman

@SeanAdelman

I am writing this a prelude to watching the interview with Representative Cathy McMorris-Rodgers. I felt it important to give a prelude because I am having a really hard time with much of what she says. Two years ago she was someone I trusted to do the right thing by those of us trying to advocate for people with disabilities. She was someone we thought of as a true representative, not just a figurehead who was power hungry and let partisanship rule the agenda beyond doing what was right. Now after watching this I am confused and feeling betrayed.

As most of you know I am an orthopedic surgeon and parent of a nearly 21-year-old daughter with Down Syndrome, I have written 4 books and run an advocacy site dedicated to people with intellectual and physical disabilities, so I do have some understanding of these issues. My amazing daughter just finished her college program and is now working as a summer intern for Senator Maria Cantwell.

McMorris-Rodgers mentions how important employment is in her interview, and I could not agree more with what she says about the importance of employment and independence. She discusses the statistics of employment for people with intellectual disabilities (ID) and how much of a positive effect being employed has on those with ID. It’s not just those employed; it is also the coworkers who benefit she states. Her son Cole, who has Down Syndrome, needs extra health care and having health care that best fits your needs is crucial and it is her goal to make sure everyone has access to that.

She says time and again during the interview that Medicaid is crucial to those with disabilities and that she vows it will not be cut. She also says that the media has it wrong, that there will be more funding for Medicaid under the health care bill that she supported.

Last she discussed the importance of education and inclusion for everyone, but particularly with ID; that our progress towards inclusion in schools makes all the difference when looking at outcomes and independence for those with ID.

Now the tough stuff, it’s all tied together. Employment support and transition programs for college and employment for people with ID are tied to Medicaid and the bill she supports will result in less money for those services. Which leads to her saying that she doesn’t want to cut Medicaid even though she supports and voted for a bill that essentially does just that. She states that the media has it wrong, that her bill does not do that, but its not just the media, it’s the CBO, the Kaiser Foundation, and every major medical, hospital and insurance group.

Health care is critical and there are already 28 million Americans without health care, the CBO as well as the Kaiser Health Foundation predict this plan will increase those numbers several million fold. If that weren’t enough it will end many of the portions regarding preexisting conditions, and Down Syndrome is a preexisting condition. Many of the GOP have said that lack of insurance doesn’t kill people. That is actually not true there is a study in the Annals of Internal Medicine reviewing all of the current evidence supporting the increased mortality and worsening health of those without insurance. There are many cofounders that confuse this issue, but the fact is there is an increase risk of dying if you don’t have insurance.

Education, she sites the importance of education, yet the early intervention programs for people with ID are based on, you guessed it, Medicaid. To make this even more inspiring, is the fact that are current Secretary of Education, whom she supports, is propagating an agenda which has been shown time and again to be discriminatory against those with disabilities. Whatever you think about charter schools and vouchers it has never been shown to be positive for people with disabilities. Having said that, I must confess that there is currently a moment, particularly in our catholic schools, to improve inclusion and help right those wrongs, but that is not what this administration is proposing.

The argument from Cathy McMorris-Rodgers is that the media has it wrong that the liberals are making this up. Except, she is the only republican in the state who supported the bill (the other two voted against it and do not have a child with Down Syndrome) the bill was passed before the CBO (a non partisan organizations created for exactly this purpose) had a chance to review it. Last, every major medical society, hospital group, and insurance company has come out against this. If part of this bill is to support doctors and hospitals, why would you not listen to them?

As a surgeon who has practiced for 20 years in different states, in the Air Force, private practice, and now working with Kaiser, I have a unique perspective. Every single day of my career I have been forced to make decisions based on what insurance was going to pay or not pay for. Whether it was the military, Tri Care, Blue cross or Kaiser, that was true before Obamacare, during Obamacare and likely whatever comes next. Her comments seem to reveal a lack of understanding of the physician-patient relationship and how that is truly affected by what she proposes. And if so, then as a “representative” shouldn’t she listen to what we (the people who know) have to say?

Please… someone help me understand this!

click on the link below for the interview

http://www.nationalreview.com/corner/449083/nr-live-mcmorris-rodgers-gets-personal-about-health-care-and-raising-son-down-syndrome

Me, My Identity and My Disability

Me, My Identity and My Disability

By Amy

@APFFDJourney

Hi everyone! Hope your week has gone well.
After my latest blog post talking specifically about the word disabled, I thought that I’d explore the topic a little more and speak more about my identity as a disabled person.

I was able to converse with lots of people about the word disabled and received mixed reactions about the word; therefore I assume that I will receive lots of mixed reactions talking about disability and identity, too.

As always, I’d like to let you know that these opinions are 100% my own and I am in no way speaking for other disabled people, just myself.

I’ll start by briefly recapping what I spoke about in my latest post.
I used to absolutely hate the word disabled as I felt that it was a derogatory term! 
As a child, I felt totally able and didn’t want to class myself as anything but.

However with age I grew up to realise that I didn’t actually think being disabled was a bad thing.
Disabled wasn’t really a bad term… if I fit the criteria for a disabled person, why was I so ashamed?

I believe I was ashamed because of my poor self-esteem and this meant that I automatically assumed being disabled was a negative.

It took me years to accept my disability as part of my identity! 
I would hate any attention being drawn to my disability (people asking me about it, even going to hospital appointments for it) and now I couldn’t be any more opposite if I tried.

I believe that identity is a complicated thing whether you are disabled or not, I mean our identity changes constantly, doesn’t it? I never imagined growing up that I would one day be vegetarian for example, and now I believe it’s the best change I’ve ever made!

It’s just the same with lots of other things, we always assume we are going to stay one way forever but life gets in the way and shows us it’s OK to change.

We grow up and parts of our identity adapt to what’s around us… what music we like, what hobbies we have, etc.

But what about something you are BORN with? Now that’s a little more complicated.

I was born with my disability just like many others around the world, so we have to deal with this part of ourselves forever… that’s quite scary isn’t it? 
Imagine knowing you cannot change this thing about yourself even when you don’t like it, even when you know you are different and it’s just stuck there forever…

That’s what my life was like before I accepted my disability.

It emotionally pained me for every second of everyday that I couldn’t change and get rid of my disability, I just wanted to be ‘normal’ and enjoy what I saw in the mirror.

I felt cursed, unlucky, deformed and wrong… but most of all, I felt stuck.

This was my identity that I was stuck with.

As I said it has taken years, but the hard work on raising my self-esteem and being open about my disability has paid off more than I could have ever imagined!
I’m happy with myself and I fully accept being disabled as part of my identity happily.
When people meet me for the first time they sometimes notice my limp or my missing fingers and you know what? I wouldn’t have it any other way anymore… it makes things more interesting and is a SURE way of starting a conversation!

People rarely ever have a mean streak inside them about disabled people, of course sometimes they do which is awful but most of the time I’d say 99% of people are just curious… they find it interesting and want to learn about it!

Now when I see someone staring at my leg or my hands I don’t instantly hate them and think they’re mean… I think oh, they’ve never seen someone with 8 fingers and one leg before, they just wanna know more about it.

Curiosity is a natural human emotion that we all feel, when we see something we don’t understand we want to learn about it :)

I didn’t ever think there would be a day when I could say this, but just like I have brown hair and blue eyes, I also have 8 fingers and one leg.

It’s an identity that I’m happy with, and even proud to have.

The worst part of the hatred towards my own identity is that these monsters were created by nobody but me.. I made the decision to hate my disability and identity…nobody else!

My family loves me ever so much! 
My friends love me, my boyfriend loves me… nobody apart from myself has ever wanted me to change, they love me for who I am so I have to say, making the decision to love myself for who I am just like they do completely changed my life for the better!

Now I finally feel free to live my life after 19 years of self hatred because of my identity, I’m happy to be the Amy everybody knows and loves and since I learned to love myself, my life has blossomed and is beautifully full of colour.

If you are or ever have struggled with this, I think a really simple way to look at the situation is to take a step back and think to yourself, Is what I’m thinking real?

Let’s say you make a mistake or bad decision, it’s pretty likely the people that love you will be honest with you and agree.

Now let’s say you think you are worthless because of disability, the people who love you are still honest with you and will OF COURSE tell you the truth which is that you are wrong! 

What I’m trying to say is almost always our family and friends are honest with us and we believe them until we want to punish ourselves! 
We have to trust them, to know that its way too easy to self criticize and self hate even though nobody apart from ourselves feels that way.

We have to love ourselves and as hard as it is, the first step is accepting love and truth from everyone around you because you’re amazing.

It’s a long journey to self-love but coming from someone that has traveled that road, you will NEVER regret it.

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The Time is now to Advocate for Accessible Self-Driving Vehicles

The Time is now to Advocate for Accessible Self-Driving Vehicles

By Tim Clemens

@TransparentTim

Washington State’s Governor recently announced an executive order enabling the testing of fully self-driving vehicles in the state without a driver in the car. He mentioned a number of benefits including eliminating accidents. One important benefit of self-driving cars he mentioned in the order is enabling those who can’t drive to go places on their own. Self-driving cars are a hot topic in the disability community because of this. There have been numerous discussions on the issue including a report by the National Council on Disability. The good news is there is a company that has been serious about the benefits of self-driving cars for people with disabilities. Google’s self-driving spinoff company WayMo was the first to drive a blind person in a fully self-driving vehicle with no safety driver on public roads. It has been pushing for complete autonomy both to reduce accidents and make point-to-point travel more accessible.

I think one of the most exciting possibilities with self-driving cars is the potential to make point-to-point travel inexpensive for everyone. For example, Uber has offered at times flat rate rides for $3.50 anywhere in the city limits of Seattle. Without a human driver maybe they could afford to offer that price all the time. If done right self-driving vans could replace the inconvenient aspects of Metro Access. Another benefit is the more fully self-driving vehicles we get on the roads, the less injury accidents we’ll have – in theory.

While many people with disabilities are able to get special training and equipment, there are many who are not able to drive period. It can cost two thousand or more for specialized training, and that doesn’t even include the cost of the equipment for your car. Also, there are some disabilities such as blindness, where there are no assistive devices allowing them to drive. On the other side of the debate, some people with disabilities are concerned that self-driving would eliminate manual driving assistive tech such as hand or head controls.

The executive order may make the state a popular place for companies to do autonomous driving tests because it is very permissive. It appears to allow testing with members of the public even for a fee. A safety driver doesn’t have to be in the vehicle, it also doesn’t appear to require data to be disclosed. This is significant because there are states like California that require it, and some companies don’t want the information disclosed. The no driver required piece is especially important for bringing to market vehicles, one can buy that wouldn’t require a driver’s license and for self-driving ride hailing services. Google/WayMo picks up members of the public in Phoenix, and Uber does too in Pittsburgh. Hopefully these companies start picking up members of the public in Washington.

I worry though that companies testing these vehicles won’t prioritize ensuring all people can use them. For example Google/WayMo uses vans. However, I haven’t seen any news that they have outfitted a single van for picking up wheelchair user in their Arizona testing program with members of the public. Recommendations by the National Council on Disability include requiring government funded researchers to make their systems accessible and for congress to mandate self-driving vehicles be accessible. The State of Washington should mandate accessibility for self-driving tests.

It may just be a few years before fully self-driving vehicles with no safety driver are picking people up. When officially launched, these vehicles need to be accessible for all. In the meantime, we need to be advocating to both government and companies that testing include people who can’t drive, and people who require accommodations to equally access transportation.

No driver? No problem: Self-driving cars could soon be tested on Washington roads

http://www.seattletimes.com/seattle-news/transportation/inslee-order-says-companies-can-soon-test-self-driving-cars-on-washington-roads/

Google/WayMo blind driver video https://www.youtube.com/watch?v=ArYTxDZzQOM

Google/WayMo pick up members of the public in Arizona https://www.theverge.com/2017/4/25/15415840/waymo-self-driving-minivan-early-rider-phoenix

Self-driving cars a potential lifeline for the disabled

https://www.nytimes.com/2014/11/09/automobiles/in-self-driving-cars-a-potential-lifeline-for-the-disabled.html

Self-driving cars should be designed for people with disabilities

https://motherboard.vice.com/en_us/article/self-driving-cars-should-be-designed-for-people-with-disabilities

The blind community has high hopes for self-driving cars

https://www.technologyreview.com/s/602555/the-blind-community-has-high-hopes-for-self-driving-cars/

National Council on Disability November 2015 report

https://www.ncd.gov/sites/default/files/NCD_AutomatedVehiclesReport_508-PDF.pdf

How Do I Feel about the Word Disabled?

How do I feel about the word disabled?

Hi everyone!

The Struggles of Equal Access(ability)

The Struggles of Equal Access(ibility)

By Christine Miles

@ChrisDisability

As I’ve highlighted in past posts, the Seattle area can be a little troubling to navigate – especially for those of us with mobility disabilities. Hills are one part of life we cannot change, but when it comes to issues like crappy curb cuts, that is something that can and should be changed. In fact, crappy curb cuts are such an issue here that there is an active lawsuit and awareness campaign over them. Led by Disability Rights WA and Rooted in Rights’ #CrappyCurb campaign, disabled people in Seattle are attempting widespread changes to the ways we access the city.

Curb cut – the crappy curb cut in an access aisle. The issue is the dark area between the car and the start of the curb cut. The dark area (ramp portion) is constructed in such a way that it is hard to push a cart up.

 

 

 

Once you know what constitutes a crappy curb, it is easy to spot them everywhere. I’ll admit, the regulations governing curb cuts look a little intimidating. There are lots of numbers and ratios that come into play, and I certainly don’t (or wouldn’t) know how to check the accessibility of a curb cut from that perspective. However, there are some easier things to spot. A good curb cut will be smooth connecting the sidewalk and road seamlessly, have a textured portion to alert people who have low vision or are blind, there will be one cut for each crossing, and so on. On the short drive from my home to the mall, I have seen only one or two that fit into my description. Most are in need of repair, missing the textured bumps, have one curb cut for two crossings, or flat out don’t exist at all. Any disabled person would tell you, there is more to equal accessibility than just curb cuts.

I’ve been thinking a lot about accessibility beyond curb cuts recently. It all started with a trip to the grocery store. Every week, we make the three-mile drive to our local grocery store, and every week, I see the same problem. Like most grocery stores, it has a large parking lot, which means plenty of spaces marked for people with disability parking placards, but the markings are wearing down and it can be hard to see the lines. This is the number one problem in the grocery store parking lot. There are parts of the lot where the lines are so faint, a driver has to guess where they are. In particular, there are spaces near the accessible parking that are so worn down, it can be hard to tell what goes where. Most accessible spaces have a white or yellow, wide, diagonally striped area to the left or right of the space. This is called an access aisle. Many of the access aisle markings in the lot are barely visible. This means they are often used as parking spaces even though there is no sign informing of disabled parking. I don’t know much about ADA law, but I know enough to recognize that’s a no-no. I’d say that about 75% of the time we visit the store, someone has parked in an access aisle. Additionally troubling is where the access aisles connect to a curb cut. There is one access aisle I often see used as a parking space that has a crappy curb cut. One day, I tried to push a mini shopping cart up the crappy curb, and could have easily tripped and fallen in the process. Even with no car in the aisle, I would have struggled because the curb wasn’t seamless between the parking lot and sidewalk.

Access aisle – an example of an access aisle with clear enough markings to know you cannot park there

 

 

 

 

 

 

 

My point about the parking lot issues was proven earlier this week when I went to the store with someone I don’t typically shop with. While we were inside, he came out and moved the car. Upon leaving the store and seeing it in the very access aisle that is so faintly marked, all I could do was laugh. Included with this piece are the photos I took. In one, you will see the accessible parking space nearby where the access aisle lines are somewhat clear, and in the rest you will see the view from the car. I didn’t think of taking a few photos of the space empty, but you can be sure the lines are so faint. To me, it is logical to not park there – even with the admittedly dubious lines. There is no sign advertising disability parking, and there is a curb cut. When we pointed out that there is a curb cut, the person said, “it needs a no parking sign.” While I wouldn’t necessarily suggest a sign, I do realize that what needs to occur is re-painting the lot to make it crystal clear. Even so, I admit that I struggle to comprehend why there is an understanding that in a store parking lot, it’s “ok” to park in front of a curb cut, but I’ve never experienced someone doing that on the street. I suspect that if a person parked in front of a curb cut on the street, they would be ticketed. The thing is, the NW Regional ADA center reports that you can be ticketed for blocking an access aisle, and the price is a fairly steep $450 if you’re caught. There has to be more as a solution to this problem than frustrated people with disabilities, who often have to sue to make change, and fines.

Car in access aisle – the car parked in the access aisle. The sign indicates an accessible space is for the space to the right, and you can see the faint white mark showing the access aisle.

 

 

 

I perceive that most people believe enforcing the ADA is something to do because it’s nice or a luxury. Other than an obvious civil rights issue, to put it bluntly, the ADA is a law – not a choice. Also, this law benefits everyone. Using the examples of curb cuts or access aisles, these ADA mandated accessibility features hold multiple purposes. Most obviously, curb cuts help people with mobility disabilities, in particular, safely navigate around a place. They also benefit bikers, delivery drivers with hand trucks, strollers, and many others. Curb cuts are wonderful for when I’m tired, as I find myself tripping over everything in sight when I am wiped out, so I appreciate a lack of stepping up a curb. Unfortunately, I still can trip over ones that are in need of repair. Similarly, access aisles are a clear indication of no parking, but for people who use mobility devices, they are an essential part of parking. It is space to put your device near your car, so the transfer can be easily accomplished. This is why I’m so bothered by people parking in the access aisle at the store. What would happen if I was going to the store with a friend, and she had no place to put her crutches or walker once she parked? We would likely have to turn around because the accessible places are often full. I wonder how many people have to turn around every day in that grocery store parking lot.

Imagine how accessibility would be different if there were people in charge of ADA accountability in a manner similar to a food inspector or a health and safety inspector? I realize there are often ADA compliance officers for places like school districts, but what if they were everywhere? What if they held the kind of power and acceptance that food inspectors do? That would dramatically change this conversation. People with all kinds of disabilities wouldn’t be forced into a life of adapting to a law that is never properly enforced. We wouldn’t have to police places just to have equal access. If it’s not parking spaces, it is something else. Disability rights journalist David Perry recently wrote an excellent piece about the accessibility issues at restaurants. For me, this is usually just a case of a door that is too heavy, or tables and chairs that are very tall. In comparison to some issues, these are pretty insignificant. I see many restaurants with menus that are not easily accessible, for example. How can you order if you can’t see the menu? No matter what the issue, I want to know; what do we have to do to change the conversation around the ADA? Why is this not seen as an issue of equal access, or as important as other civil rights acts?

If you have any thoughts, post a comment or tweet me @ChrisDisability using #EnlightenNotInspire, and join us for the next Twitter chat Friday June 16 at 6pm pacific.

For more information check out

NW Regional ADA Center. If you are not in the northwest, there is likely a regional ADA center near you

http://nwadacenter.org/factsheet/parking-people-disabilities-washington-state

David Perry’s article on restaurant accessibility. Also, follow him on twitter @Lollardfish

https://www.eater.com/2017/5/31/15701042/american-disabilities-act-restaurants-compliance

The lawsuit by Disability Rights Washington, and campaign #CrappyCurb

http://www.disabilityrightswa.org/reynoldson-et-al-v-city-seattle-lack-accessible-curb-ramps

https://www.facebook.com/rootedinrights/videos/917808274974796/

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Hope Engine

The Hope Engine

Sometimes things that have a great effect on our perception of the world come in unexpected places. I know I have said this before, but I am still shocked at how profoundly this affected me last night. After a busy week it was nice to sit down on a Friday night and just relax. The dogs were walked and a puppy was sitting comfortably in my lab so I put my feet up and turned on the television. The first channel that came up was an early audition episode of this years America’s got talent. I started watching last year out of curiosity and was genuinely surprised by some of the amazing and interesting individuals who tried. It suffices to say it was fun/harmless entertainment.

Most of the acts were fun, but certainly something that would be easy to turn off as it was getting close to bed time, which is embarrassingly early for me. The last performer was a young lady named Mandy Harvey. She was a 29 year old woman who lost her hearing at the age of 18 when she was in music school. Mandy had to drop out when she couldn’t hear well enough to even take the tests and now was absolutely deaf. She suffers from what she describes as a connective tissue disease that affected the nerves from her ears. The reason this is important is that if you don’t have the nerves, there is no signal. You can’t hear anything, its the difference from turning the radio off or turning it way down. It was of course tearful to watch the story unfold as she talked about crushed dreams and not even remembering what her dad’s voice sounded like. Singing since the age of 5 and trying to make music and sound your entire life, just on the cusp of that you loose all of your hearing.

It is certainly not that there haven’t been cliche stories (also often wonderful) about something terrible happening then overcoming those odds. One of the movies I always remember was about a figure skater who lost her vision in an accident, but was able to overcome her visual impairment and skate again. We have all witnessed amazing things of people who have overcome great disabilities only to become stronger in other ways as a result of it.

What happened next made it different for me. She sang, I was expecting something like that, but she really sang, and did it beautifully. After being stunned by her ability, it sunk in. She was really able to sing in a way that touched others, but she couldn’t hear a single note, not even a hint of a note. She spent years figuring out how to use electronics to match her muscle memory to what the device was telling her. She loved the “memory” of singing so much that she did it for the love of it knowing that she could , herself, never enjoy it. At least not in the way she had previously.

Instead of giving up and moving on to be creative in some other way she found a way to do it. Like a painter going blind who continues to paint… In the emotion of the moment its easy to loose the gravity of the meaning of this. How many things in your life do you love so profoundly that you would continue to do that just for the memory of it, knowing that you could never actually experience it again. Not just that, but remember this was a music student who knew what good and bad music was. She was not just creating, but putting herself out there with no way to know if what she was doing was good or bad. Having the faith and the strength to know it didn’t matter as much as the act of doing it and being OK with however it turns out.

Everyone should have something that fills their soul like that. Something, that the mere thought of would give you hope that no matter what its all worth it. When we look at our children the thought of them can fill us with a joy that you really can’t describe, but you will always recognize that feeling even if your kids are across the world from you.

Everyone has bad days, we all have things in our life that are difficult. On those days what is it that keeps us going? We have talked before about support and inspiration. Sharing with each other so that we have a united front. At the heart of everything, it’s having hope that keeps us grounded. My last blog I wrote about HOPE. If hope is the dream that you see when you close your eyes, then this kind of love is the engine, the power plant that gives you what you need to get in your car and drive. Having a dream is only part of it, you need energy. A road map without transportation is a terrible thing.

Do me a favor, watch this clip https://www.nytimes.com/2017/06/08/arts/television/americas-got-talent-mandy-harvey-deaf-singer.html?_r=0

then think about what it is in your life that fils your cup to keep you going. What is it that you love so profoundly that the mere memory of it is enough to keep you fighting even if you will never enjoy it again. If you are fortunate enough to be able to answer that wonderful, its not easy. It sounds like it should be, but its not.

I am still struggling to answer this myself. I love my family, without them there would be a whole that would suck all of the light out my current existence. What in my life do I love so much, excluding the obvious as mentioned above, that I would do what Mandy did, or at least try to. This is at the heart of what I think about when I try to understand what RaiseExpectations is all about.

The interesting truth is that Mandy’s loss was the gain of everyone who listens to her. Her music is like Santa clause giving everyone gifts that he can’t see. He doesn’t even know what any of these gifts are. Then he watches as all of those people he gave gifts, enjoy their presents so he knows what he did is worthwhile.

HOPE

Hope,

I was inspired to write this because I heard from the parent of a child with a disability on social media talking about Expectations. Seven years ago my wife and I came up with the bright idea to create a company designed to Raise Expectations. We have always preached that you don’t know what you don’t know. If you assume what someone is, or is not, capable of then you will never find out what they can do. It has been shown in many studies that perceptions effect people in ways that we are sometimes not conscious of. I have written previous blogs about “lowering the bar” based on preconceived notions. That said, the mission we set for ourselves was to broadcast to the world that everyone has value and that we cannot set limits.

There is no question we do have limits and that all of us will find things that we are good at and things that we are not good at. However, there is dignity in failure. If you do not fail you will never know what you are capable of. If I love and believe in you I will let you have a chance. Part of the job of being a parent is allowing your child to succeed or fail, but being there for them when they do fail is crucial.

I am not so naive as to think that every person should be able to do everything. There are people out there who are resentful for not being able to achieve what they think they should, or sadly not even wanting to try because they don’t believe they can.

Our basic tenet on RaiseExpectations is to believe and to lead by example. Devon likes to call herself the Ambassador of Possibilities. Dreams seem more tangible, when there is someone you can relate to that has achieved the things you dream of.

Part of the dignity of failure, is dealing with failure. It is one thing to be there for your kids, but what about when you grow up? What happens when day after day people disappoint you?

A hard working mom messaged me about disappointment. She wants to believe that we should have higher expectations. Disappointment becomes the norm and coping with the day is just survival. Stories about other people succeeding are just fairytales that don’t apply to them.

There are essential elements about life we all need; air, water, food. One of the essential elements that may not be as tangible, but is equally important is hope. I don’t mean hope like some poorly written romance novel, but a belief that you have a future, a purpose.

Without hope there is no possibility of what might happen and thus no reason to try. Every major religion is based on hope. A belief that there is a greater power in your life to help give people purpose, something to look forward to. There are many stories about religion and giving the disenfranchised meaning so that they have a purpose. We need hope to have a reason to move forward, to get out of bed. Believing in something greater then yourself means there is a reason for you to do good. It means there is a reason to persist regardless of your circumstance. Society as a whole depends on hope, it may take on a different meaning based on who you are or where you live, but hope is what keeps looking towards tomorrow.

For many of us some days feel like we are stuck in a time loop with each day being exactly the same as the one prior. What is the point in changing anything if you are going to continue to rely the same day no matter what happens. Its not always a time loop filled with misery and disappointment, but feeling stuck in this time loop is its own kind of prison. I can honestly say that many mornings I wake up and the first thought in my head is “what am I doing this for?” The alarm clock goes off at the same time and I do the same things and nothing feels different.

This is why hope is so important. Even though it may be a single ember in the drama that is your life it can be stoked to remind you that you have purpose. Even if the only think you can do is smile at someone because you don’t have the energy to talk, or write, science has shown that one smile can make a difference. Giving someone a smile can physiologically make them more open to listening to new ideas. On your worst day you can make someone look at the world differently, even if only for a moment.

There will always be days filled with disappointment, resentment, and even anger. We have to use the tools we have, where we are, right now, the best we can. Surround yourself with people who build you up, be the person for someone else who needs it. At the end of the day you have this one life and you can look forward to each new city on your journey or count the mile markers whilst ignoring the scenery.

I am not writing this to try to convince my readers that fairly tales are true and we should all believe in these magic feelings that makes everything better. I am writing this in the hope that the people who read this will remember it when I am having one of my dark days; so that you will be the persons who reminds me to keep moving that what we do and say matters.

Just remember give grace you don’t have to do everything, in the end we are all in this together.

Music Festival Accessibility

Music Festival

My experiences at musical festivals as a disabled person

I feel this is a topic that could spark discussion as I have spoken about issues many people forget about (not just access).

Hi everyone! Today I’m going to be talking about my own personal experiences at some fantastic music festivals as a disabled person here in the UK.

Disabled access information is a topic that you can’t find much information about when searching online, and the only way to truly know the struggles and the precautions you have to take as a disabled person is if you have spoken to someone that has already attended and can tell you all about what you’ll more than likely need to be cautious about.

When I was attending my first music festival I did try to do a search online and couldn’t find anything to help and advise me.. I ended up having to just email the festival and hope for a reply – which was quite a pain!

What Is PFFD?
Proximal femoral focal deficiency (PFFD), also known as Congenital Femoral Deficiency (CFD), is a rare, non-hereditary birth defect that affects the pelvis, particularly the hip bone, and the proximal femur.
The disorder may affect one side or both, with the hip being deformed and the leg shortened.

Because of this condition, I have had to wear a prosthetic leg from birth, and undergone operations to fix the deformed leg including having the foot amputated.

I hope this post includes helpful and useful information for any disabled people out there planning to attend a music festival

Like a lot of people, I absolutely love music! The chance to see my favourite performers live in person – how could I turn that down?! I was unbelievably excited but there was only one worry… would I be OK attending as an amputee?

The first festival that I ever attended was Download Festival in 2014 – I couldn’t wait!

I love rock music and some of my favourite bands were playing there, however like I said I was worried about how my disability would affect me at such a place.

I found that emailing the festival with queries did prove to be helpful as they did respond fairly quickly however I think there could be much easier ways to receive information regarding disability at the festival and to have these queries and worries responded to immediately.

I decided not to camp in the disabled campsite as in 2014 I was not struggling with pain from walking with my prosthesis as much as I am now – I was OK.

The first thing that was a struggle was carrying my luggage.. I do suffer with lower back pain and even though I tried my best to pack lightly I was still unfortunately having a hard time.

The festival did offer wheelbarrow type things to place your luggage in – but I would’ve struggled too much to push that and also.. they charged quite a lot of money for it!  I had to rely on my helpful friends to make it to the campsite.

Finally arriving at the campsite (about a 35 minute walk from the entrance) I was so exhausted just from the walk in –  I had to take a break on a camping chair while my friends set our tent up.

I don’t know what I thought a festival would be like.. but I had done so much walking already and even though I was in less pain back then than now it was still taking a massive toll on my body already!

My cousins shoes.. you can see how muddy the festival was!

I started to realize fairly quickly that I should have camped in the disabled campsite.. after a few days of walking in pain with my prosthesis and my poor back, I had to stay in the tent for the last day of the festival and purely rest.

I need extra space in a toilet cubicle and I was happy to read that at Download Festival they have disabled toilets all over the campsites, not just in the disabled one.

I have to say.. their disabled toilets weren’t much different to the regular toilets AT ALL which was quite disappointing!

As you can see in the picture above – the mud was horrendous!

I had not anticipated bad weather as this was a summer month and seeing the mud was heartbreaking.. knowing how hard things were about to become walking with my prosthesis.

Wearing my prosthesis and attempting to walk through that mud was close to impossible and I really felt like just giving up!

I asked a worker at the festival if they had any wheelchairs on hand that I could maybe borrow to get back to my campsite as I really felt I just couldn’t walk anymore.. but they had none.

Also, I had to take medication during the day so I asked a worker while in the arena if I was able to have some water in order to take my tablet – and strangely they refused me? Even though I had seen other workers doing this for other people this particular worker told me that it wasn’t possible to hand out water?

Overall seeing my favourite bands was truly amazing and I have memories from Download Festival that will last my lifetime – I have to say the other people attending the festival were all so kind and generous.. always willing to help me when they saw me struggling and even though I have attended a few different festivals I say to everyone that Download Festival have the kindest crowd

I do think that I made an error in judgement by not camping in the disabled area however there are some things that I feel Download Festival could have done to make life easier for those of us that still struggle despite not camping in the disabled campsite.

I have also attended other festivals too and below are some ideas that I have gathered from each of them that I think would benefit disabled campers massively if ALL festivals were willing to do them:

• Have wheelchairs and crutches at hand

• Include more seating around the campsites and on the walk to the arena (which is a 25 minute walk) so that people can take a break if needed

• Create an information booklet to people that request it including distances to walk, size of disabled toilets, whether all the amenities are accessible, what happens in bad weather etc

• Have free water at points around the arena and campsites for those of us that need to take medication during the day

• Frequently ask disabled customers how the festival could improve and how their experience was

• Keep in mind that it isn’t just access information disabled people are after; it’s everything! from walking distances to water points to what the ground is like.

Quick note: Every suggestion towards festivals that I have made I am aware would benefit most people, too! Not just the disabled

The Paratransit Puzzle

By @ChrisDisability

If you were to get a group of disabled people in a room and ask them about barriers to independent living, it wouldn’t take too long before you would hear about transportation. This means many things to disabled people. For some of us, it means regular public transit; others, paratransit or driving, but regardless of which form you use, it is rife with challenges – especially surrounding general access or accessibility issues like speaking bus stops or spaces for mobility devices.

One area of transit access that I struggle with is hills. I moved from my hometown to one closer to friends and family at the end of last summer. Going into the move, I was aware that there was a steep hill going into my neighborhood. I decided the inconvenience was minor compared to the reward – less expensive and closer to loved ones. What I didn’t know was the amount of hills throughout my neighborhood. Every direction I go, there’s a hill. If I had known this, I may have thought it over before moving. The City of Seattle actually has a solution for hill haters like me called AccessMap. If only it was available in my town! Hills and all, I still moved. So, since moving is not a possibility at this time, I’ve learned to adapt. Unless it’s a day where I have access to a car, in order to leave the house, I have to take an Uber or Lyft the few blocks to a bus stop. As you can imagine, this gets pricey fast. An average of $8 a day to be precise.

After about six weeks of this, someone, frustrated watching me waste money on Uber, suggested I apply for paratransit (called Metro Access in Seattle) to see if that would alleviate the problem. I couldn’t believe I hadn’t thought of it sooner. Like most services, this has an application process, and like most disability specific services, it is convoluted and maddening. If I were to design the application, I would eliminate a few parts from it and simplify the rest. For example, I wouldn’t require a screening just to obtain an actual application. The application itself wasn’t particularly frustrating as it asked the types of questions I’d expect; disabilities, challenges to using transit, examples of places you travel etc. After that is where things get really irritating. After a call, I personally deemed unnecessary, to confirm application information, you’ll be sent instructions regarding an in person evaluation. This is where things really begin to fall apart in my opinion. I’d expect the in person evaluation to cover examples of all the barriers and challenges a person has to riding transit, but, as far as I could tell from the instructions, it doesn’t. The instruction sheet mentioned ability to walk, navigate a curb cut, and get on and off a bus simulator. Where are the parts about uneven terrain, hills, or inclement weather? All of these things were highlighted in the application, and comprise the main barriers I have to bus riding right now, but they aren’t mentioned in the instructions for in person eval.

Here’s the thing – for those who don’t know, Seattle has plenty of hills; particularly in the neighborhood surrounding the clinic. How hard is it to go outside and evaluate any barriers regarding hills? I understand inclement weather such as snow or ice cannot be appropriately evaluated because snow is a rarity here, but surely, uneven terrain or hills can be evaluated. After reading the paperwork, I decided I may as well just go to the eval and then appeal it when I was denied. Only, there is no appeals process, or, if there is, it was nowhere on their website or in their rider handbook. So, I did a little more digging. Riders like myself who typically use a regular bus, but have occasional barriers, are “conditionally eligible;” as in, as long as there’s a barrier and you have Metro Access services, you may use it. Fair enough. Until the caveat, because of course, there’s one coming! Metro Access will only provide enough service to remove the barrier, so in my case, take me to the bus stop. Here’s the problem with that. Even if I were to be deemed eligible, which you can see from above is a big if, I’d be expected to wait in their 30 minute window – to potentially be picked up on time, but likely early or late and be given a loose estimation of when the van would actually show, as I’ve consistently seen with a good friend who uses Access regularly, and then and only then, be able to travel as far as the regular bus stop down the hill? How am I supposed to plan a trip anywhere, get to an appointment, or even work, if I can’t guarantee Metro Access will come to pick me up when it’s supposed to, and then make the transfer(s) to a regular bus? All of the hassle and uncertainty isn’t really worth the few dollars I’d be saving, so I’m back to using Uber/Lyft to travel to the stop. Yes, it’s more expensive, but in return I get a guarantee of pick up time and can track the location of the vehicle.

Upon hearing my complaints and experiences trying to navigate the process, my boyfriend came up with an idea. As he’s a data guy and uses public records in his work, why not obtain the public record of Metro Access users who are in a similar situation as me? So, he did.

This is the email response he received:

March 3, 2017

I am writing in response to the public records request you submitted to King County for the percentage of ACCESS users who were picked up to be dropped off at a bus stop for the year 2016. King County Department of Transportation (KCDOT) Metro Transit ACCESS staff ran a query on ACCESS clients who were dropped off at Metro Zones (coded “MZ”) on their trips database. The drop-offs do not necessary represent clients who were dropped off at a MZ to catch a fixed-route bus; rather, MZ drop-offs generally reflect situations where clients were dropped off near their intended destination at a MZ due to a lack of other available safe drop off locations in the area.

ACCESS reports that according to their query results, in 2016, there were a total of 875,350 ACCESS trips delivered and of those, 16,095 (or 1.8%) of trips were reported as MZ drop offs. 10,391 ACCESS clients utilized the service in 2016 and of those, 1,516 (or 14.6%) were dropped off at a MZ on at least one trip over the course of the year.

The information above was compiled in specific response to your request.

This got us thinking. Surely, if there are so many others like myself just needing rides to a bus stop, there should be a more efficient way of approaching this. Metro Access reports in their rider guide that “an average Access trip costs $48. An average bus trip costs $4. Fares pay a portion, but local taxpayers pick up most of the cost.” That means that for the 1,516 people who took those trips, it would cost the county approximately $72,800 in Access services using their figure of $48/trip. I’m not a policymaker or too familiar with budgeting for a county, but it seems to me that there could be other ways of providing that kind of service without spending that much money. Metro already provides subsidized taxi service through a program called TaxiScrip, but some of the same flaws that are present with Access such as uncertainty in pickup make it a less appealing option. Plus, it is incredibly expensive to regularly ride a taxi. One cheaper option that comes to mind is using services such as Uber or Lyft in conjunction with regular transit. Now we don’t know if all of these riders can use these services, but for ones that currently do anyway, I could see immense savings for riders, Metro Access, the county, and taxpayers if there was a way to incorporate these services into the public transit system. Sound farfetched? Actually, there are trials of this exact idea happening right now in Boston.

First introduced in fall 2016, the On Demand Paratransit program in Boston aims to subsidize paratransit costs and make the process more efficient for riders by allowing people to use Uber or Lyft for rides. Riders pay $2 to start, and Boston transit, MBTA, pays up to $15. If a rider were to take a trip that cost more than $17, the rider pays the rest. So, a $25 trip would cost the rider only $10. If I’m basing these numbers on what I know in the Seattle area, you can go pretty far before you would need to pay extra. For example, having made the trip before, I know I could go from my front door, with a passenger, during commuting hours to Downtown Seattle. I could also run the assortment of boring errands one takes around town for the $2. This would be a tremendous savings and convenience for someone like me. Programs like this allow disabled people to have more independence, and from a cost perspective, benefit all sides. Riders get peace of mind that their ride will show up when it is supposed to and it costs less than the traditional paratransit and using these services out right. Naturally, transit agencies have to be thrilled at lowering their bills, which in essence means that taxpayers have lower bills as well. The program started out with a group of 400 riders, and by February 2017, was expanding to all paratransit eligible customers in Boston. The MBTA reports an 18% reduction in the more expensive traditional paratransit, and a savings of at least $40,000. Even with all the benefits, there are challenges that must be addressed before this type of program can realistically be implemented in other places.

I’m aware that some disability advocates, including myself, have complained about the relationship between Uber/Lyft and people with disabilities. I’ve had experiences where I wasn’t able to be picked up (once in years), have struggled to climb into vehicles that were too tall, and certainly have seen the stories about issues with disability and Uber or Lyft. I’m not trying to argue that it’s a perfect solution to subsidize paratransit this way, because it’s not, but it would be nice to have the option. For it to be truly viable long term, Uber and Lyft would need to do some education with its drivers, and maybe reconfigure some policies particularly around issues like service dogs. However, I don’t see how what has been done in Boston cannot be replicated around the country. Obviously I’m biased, but it would be wonderful to see this here in Seattle. I believe it could easily start with riders who are in my situation; shorter trips and users who don’t have constraints like service dogs or mobility devices that cannot fold. As the outstanding and well-documented challenges with Uber and Lyft are met, the programs could expand to serve more disabled clients.

This is obviously just one perspective, and one of many issues, within the idea of transportation and disability. It is interesting to see what is happening in other metro areas and to wonder if that could work here. As I was writing this, it occurred to me that I have unanswered questions about this issue that I could possibly use to help bring something like this to Seattle. I am considering doing some research and more gathering of data, and writing a follow up about what I discover. I’d love to hear your thoughts.

For more information on the topics I’ve discussed, you may visit:

Metro Access Rider Guide

http://metro.kingcounty.gov/tops/acce...

AccessMap

https://www.accessmap.io/

Boston on demand paratransit project

http://www.mbta.com/riding_the_t/acce...

https://www.bostonglobe.com/metro/201...

https://www.boston.com/news/local-new...

http://mitsloan.mit.edu/newsroom/arti...

Metro Taxi Scrip

http://metro.kingcounty.gov/tops/acce...

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