Raise Expectations

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Raise Expectations

The Paratransit Puzzle

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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/accessible/pdf/AccessRideGuide.pdf

AccessMap
https://www.accessmap.io/

Boston on demand paratransit project
http://www.mbta.com/riding_the_t/accessible_services/default.asp?id=6442456760

https://www.bostonglobe.com/metro/2016/09/16/first-its-kind-partnership-mbta-subsidize-Uber-and-Lyft-rides-for-customers-with-disabilities/QDdHJgzg87JpwbOazyW14H/story.html

https://www.boston.com/news/local-news/2017/02/28/mbta-to-expand-use-of-Uber-Lyft-for-disabled-riders

http://mitsloan.mit.edu/newsroom/articles/Uber-and-Lyft-partner-with-boston-transit-agency-to-provide-on-demand-rides-to-disabled-residents/

Metro Taxi Scrip
http://metro.kingcounty.gov/tops/accessible/programs/taxi-scrip.html

OMG

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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.

The Battle for Healthcare @ChrisDisablity

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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.

What Inspires Me

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@APFFDJourney

Hey there everyone! Today I’ll be talking about an awesome project that I have been lucky enough to get involved in called #SuperheroLikeMe.
They are currently working on a very exciting sounding graphic novel called Eximius…on their front page it says “Be prepared to redefine the word Superhero!” which of course caught my eye straight away!
The beautifully unique thing about the Eximius graphic novel is that all the characters in the novel are special needs in some way. Of course once I learned this I felt so empowered as a disabled person myself and contacted the creator Sean Adelman straight away to get involved any way I could.

Let’s take a look at the word Super by itself:
Wikipedia definition: very good or pleasant; excellent
Now… let’s take a look at the word hero by itself:
Wikipedia definition: a person who is admired for their courage, outstanding achievements, or noble qualities
Finally, let’s take a look at those words combined SuperHero:
Wikipedia definition: a benevolent fictional character with superhuman powers
Wait… slow down! Where did the superhuman powers part come from?!
I know so many courageous, strong, and GOOD people – and they don’t have superhuman powers! I bet you know so many people that are courageous and strong too!

I think it’s safe to say that when we use the word Superhero, we don’t always have to be talking about the ones we see in comics at bookstores that have superhuman powers and abilities. We can be talking about the amazing people we know personally that are our very own and very special Superheroes. You certainly don’t need superhuman powers to be a superhero in life!

To me personally, my Superheroes are all of my amazing family and friends, because I simply don’t know what I would do without them and all their endless love and support towards me! My family and friends are all incredibly good people, like many in the world; some of them have had their own struggles and difficult back-stories just like some of the Superheroes you read about in comics. What shines through all of the time though, is their courage, which is of course another very popular trait in Superheroes. They push through and defeat every single struggle that they face, inspiring others, including me, along the way.

I’m inspired by the determination and strength that I have witnessed within my family; it has made me the person that I am today. I’ve learned how to be strong from all of them and how to face challenges with a can-do attitude! My family has taught me to always be proud of who I am, rather than ashamed. They have always treated me like their very own superhero for being so strong and courageous through all of my surgeries. They have helped me through any negativity I have ever experienced from others towards my disability. My family has helped keep me strong enough to fight through it all.

What kind of people inspire me? 

The type of people that I find inspirational, whether it be a celebrity or a family member, are the people that have been through personal challenges in life and still carried on fighting strong. This is because I admire the traits strength and courage so much; I almost feel like being around a strong or courageous person helps YOU feel stronger!

I know firsthand that life can be difficult when you have a disability, and it can be a struggle to find the motivation to carry on when times are particularly hard; but keeping a positive attitude and pushing forward despite your challenges is what will make YOU an inspiration to others also.

My personal role model and Superhero is Lady Gaga, many of you probably know her as the crazy musician that dresses up in outlandish outfits; but I’m lucky enough to have been a fan of hers for a while and have followed her and her career closely. Lady Gaga created a charity called the Born This Way foundation; the motto for her charity is “Empowering youth – inspiring bravery”. Her charity helps youth all around the world with the many challenges that young people face; from mental health issues, bullying, to helping children with disabilities, Lady Gaga has done it all and this is the reason she inspires me. Lady Gaga has also been so brave and admitted to the world that she suffers from mental health issues herself – of course this made many people around the world relate to her on a personal level and sharing her issues has helped youth all over the world to be brave and admit their difficulties too.

When I was a child, I really wish I’d had the opportunity to read something like the Eximius novel and witness Superheroes having special needs, I would’ve felt super in myself! I would’ve been able to show all of my friends at school that my disability can’t and wont stop me doing great things. I can’t even imagine how empowered I would’ve felt as a young child seeing a comic that had a superhero in that also was an amputee! It would’ve been a perfect way to help other children learn about disability! In fact, looking back on my school days I’m certain it would’ve been well-received by disabled and non disabled people alike.

Reading a novel like this as a young disabled child would’ve taught me very early on that I can achieve great things in life regardless of my disability… I can even be a superhero!
I bet as you’re reading this you’re also thinking of someone you know close to you that is your very own superhero – tell them! Let them know how much you appreciate them and how much they inspire you. Let’s bring the word superhero out of comics and use it in real circumstances, for real people everywhere!

Diversity is something that should be celebrated everywhere – graphic novels and comics included! Thanks to Sean, we may finally be getting the message out that the more people with disabilities are included not excluded, the more we teach the world all about us and the less negativity and stigma we will face.
Let this brilliant graphic novel Eximius be a lesson to creators everywhere that including people with disabilities can change the world! We can raise awareness this way for so many different conditions and disabilities; we can fight off the negative stigma, the villains that have excluded us for so long as if we aren’t a part of society.
We are REAL people, with REAL lives and we are SUPERHEROES! 🙂

The Equalizer

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The Great Equalizer

The “American Dream” is an ideal that those born in the United States and those who come here as immigrants are supposed to have. That means different things to different people; it isn’t the dream itself that is important, but having the dream. People who don’t have dreams or purpose tend to do poorly, or feel lost. Teenagers who have a dream or goal have a reason to go to school, push themselves and persevere.

One of the things as parents we have to do is foster those dreams. I know this sounds like an obvious thing to say, but it is often one of the hardest things about being a parent. Your kids are different then you and you may not be able to understand or even agree with what they want. The thing is, you still have to foster their hopes and dreams because having purpose is crucial to success. Success may mean different things to different people, but you will never be able to define another person’s success, or at least what it means to them.

What makes a successful society? The altruistic model of looking at a successful society would say that the mark of a great society is how they take care of their disadvantaged. The practical model would say that having every member of said society contribute in some way minimizes charity and adds to the stability. Globally, for a society to be successful everyone in that society has a role to play and in our society that means employment. Much has been written about employment rates as predictors of economic growth and the strength of a countries economy. In our time, employment isn’t just about a job, but having a purpose. Unfortunately, it has also been clear that the type of employment and pay vary greatly based on gender, race and zip code.

At this point, I suspect, most of you reading this are asking your selves why I titled this blog “The Great Equalizer”. To begin, we have to ask ourselves, what is the largest minority in this country, and the world for that matter. I will give you a hint, it is a portion of society that does not discriminate based on color, gender, or zip code. Since much of what I write about is disability advocacy you can correctly assume it is our disabled brothers and sisters that make up this minority.

While we talk about nationwide unemployment rates hovering around 5%, it is not an accurate reflection of all of society. In 2014 a study found that the number of people with disabilities in the U.S. who were actually employed was 12.9%. That isn’t unemployment, that is employment of people ages 18-64 who are classified as having a disability. What is also pertinent is that this rate isn’t affected by gender. In most studies, including US census data your employment opportunities are not affected by your gender if you have a disability.

This means based on the study, only 2.1 million out of 16.3 million (or about 1 in 8), civilian, non-institutionalized men and women with a work limitation, aged 18-64 in the United States were employed. This is really important because it’s not only hard on the individuals, but the Social Security and disability trust fund almost went bust in 2016, and was saved only by funds being diverted. Unfortunately, it is on track to go bust again by 2023. With more then 14 million people with a disability who aren’t employed collecting benefits, its hard not to believe this is important.

Even though most people with a disability receive some sort of governmental aid they still make far less money then their peers, and are more than twice as likely to live in poverty. We raise our children with hopes and dreams of what their lives will be like. After all, we live in the United States, home of the dream that regardless of the class you were born into, you have opportunity. No one wants to tell their child that they will likely not have a job and will live in poverty.

No matter what the family’s resources are, without social security, kids do not have access to job coaching or healthcare, as well as many other benefits. No matter what, this is currently one of the only paths in our country to independence for people with disabilities. To maintain their benefits, people receiving benefits from social security can only have $2000 to their name at any given time, forcing many of the people who may be able to work more to accept less work so that they don’t lose their benefits.

A purpose, we all deserve a purpose. Being employed gives people a purpose and has been shown to improve the physical and mental health of those gainfully employed. Thus not only is someone who has a purpose less dependent on the government, they are likely to be healthier and thus less likely to drain their healthcare benefits. “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

*based on statistics provided by VonSchrader, S., Lee, C. G. (2017). Disability Statistics from the Current Population Survey (CPS). Ithaca, NY: Cornell University Yang Tan Institute (YTI). Retrieved from Cornell University Disability Statistics website: www.disabilitystatistics.org

Disabled?!Superhero?!
Yes!

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By Christine @ChrisDisability
Superheroes are fighters, change-makers, leaders, and advocates. If that sounds terrifying or nothing like you, fear not. At one time in my life, I would have agreed with you. So, what’s the secret to going from shy and hesitant of a disabled identity, to a person who can’t shut up about disability issues?
There are a few things that led to this evolution.

It took me much longer than I’d like to admit to truly feel comfortable in my disabled skin. I have cerebral palsy, so there’s very little hiding it. You get teased and bullied — especially name-calling, have challenges finding people who can relate (and even more finding people who see you as equals, friends, or romantic interests), likely have battles with self-advocacy and accommodations, and regardless of your abilities, can be beat down to feel like nothing is good enough and you’ll never fit in here. If any of that sounds familiar, it was my childhood and adolescence as well. It is the story of many disabled people. Those of us born with our disabilities have been fighters since day 1. There is no other way you will have gotten here without fighting. That makes you super. I’ve also acquired quite a few medical conditions over the past twenty-eight years, so I’ve seen both sides – visible and invisible. You have to fight in very different ways when you become disabled. There’s the “convince someone this condition is disabling” fight, “adjust to the change in life,” fight, and the daily fights of managing a chronic condition. All of these fights as life adjusts make you super as well. Sometimes, just getting out of bed, or not needing an ‘as needed’ medication, can be a super feat.

Leaving high school, and the awkward teen years, was when I began to shed the uncomfortable feelings I had about disability. Branching out after high school and meeting new people forced me to get more comfortable with my disabled self, but the thing that made the biggest impact was meeting more people with disabilities and finding that community. I started volunteering with a local organization, assisting with clients while they expressed themselves through the arts. Not only was this a lot of fun, but also I was able to find a way to feel connected to my identity. Being around other disabled people, I was no longer the weird kid, but myself. I read a memoir by a woman with CP, and suddenly I wasn’t alone. I began to feel like I wanted to work on empowering other people with disabilities who felt like I had. That led me from special education assistant jobs to working with disabled youth. While working with the youth, I was able to learn more about how vast disability really is, and mentor them to achieve their goals. It was a wonderful experience to watch my youth grow and become more comfortable with their identities quicker than it took me. I continue to mentor a young woman to this day, and will for a very long time.

In addition to embracing disability, one of the most important realizations I came to is that I can lead or make changes without having to be loud and bossy. I think there’s a perception that leaders and change-makers have to act a certain way, and if they don’t, you can’t be a leader. Sometimes the quietest people have the most to say, and that was certainly me. One person is enough to be super and make an impact. It might not change the entire world, but you can change someone’s world. Changing one person’s world is enough to make the most shy, awkward person truly feel super. Once I realized that I could make an impact, I felt unstoppable. I use to engage in superhero change through AmeriCorps, but now, I use my leadership powers for advocacy and educating people about disability issues.
I’ve come to realize that my disabled identity is a superpower all its own. The way I view the world is through a lens of empathy and understanding. I don’t believe I would be as empathic and understanding if I didn’t have to live a life where I’m sometimes misunderstood. Life with disabilities isn’t always easy, but it is pretty great to realize that it comes with super powers.