Guest Post: Positive Ableism

This guest post has been submitted by Ivanova Smith, an Outreach and Advocacy intern at The Arc of King County. Ivanova is a recent newlywed who lives happily with her husband in Lakewood.

The term positive ableism is strange because most social justice advocates don’t see anything positive about ableism. I think there might be a little positive to be found in positive ableism. Sometimes I can get a small benefit in ways that may or may not be intentional.

For example, I went to Leavenworth with a bunch of friends from my Special Olympic swim team, along with other people with developmental disabilities who lived in Ellensburg. While there, I went to a chocolate shop by myself which had lots of tasty chocolate. I had my special Olympic sweatshirt on as I looked at the assorted chocolate treats. I had a hard time deciding what to get, so I talked to myself while trying to choose. The store clerks may have thought that I was odd, but it is just the way I am. I finally made my selection, and then I had to decide whether to use my cash or my debit card. The store clerk saw my confusion and said, “Don’t worry about it” and then gave me the chocolate for free. I walked out of the store with free chocolate, but I was now confused about why I got free stuff for having trouble making a decision.

Honestly, I loved it. It is an epic day when you get free, tasty chocolate. But then I wondered why they did that. Did my developmental disability stick out and they felt sorry for me? I don’t know. I almost felt guilty for getting the chocolate because I did not pay for it. Even though she gave it to me freely.

The only thing that I really debate about this incident was the feeling that a stereotype about people with disabilities was responsible for my treat. People with I/DD are often treated like children because they have childlike personalities. And of course, lots of people give free candy to children. The mental age theorists would look at things I do as childlike – playing videos games and having great collections of bouncy balls, stuffed bears and Pokémon are not typical for a 26 year old adult. But my personality is naturally childlike, and many people without developmental disabilities share these personality traits. (Of course, I know several abled-bodied adults that also collect care bears; yet nobody says they are mentally children!)

Another time I will experience positive ableism is on the bus. As I person with autism, I have stimming behaviors. Because I stem, people prefer to not sit next to me. I get more room which is nice, but it also sucks to be isolated. When I get on the bus and sit next to someone already seated, they often complain about me. Others may not think about this, but I go through this stress every time I take public transportation. I’m just happy that God made me naturally need to be early for everything – it helps me to get a good seat.

We live in a society that says people who have a disability are a burden and not deserving of equal rights. Some people say that I belong in an institution because I have a fun, childlike personality. Yet, I am enjoying my life, traveling with friends, and living with my husband independently. While positive ableism may not be exactly what I want to see more of in our community, I have to admit that receiving free chocolate and a little extra room on the bus is a lot better than being denied my rights and freedom.

Your Advocacy Makes A Difference

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Following last week’s amazing Legislative Forum, our team at The Arc of King County is fired up and ready for what we anticipate will be a tough legislative session in 2015. How could we not be excited to get started after hearing the stories that so many families and self-advocates shared with our local legislators on that cold, rainy Monday night before Thanksgiving. As I listened to their comments, I smiled knowing so many people were there to thank legislators for the actions they took previously to make lives better for people with I/DD in our state.

Every year, we expect a packed house of individuals with I/DD and their families because so many of our legislators attend the Forum to find out what is important to our community. Individuals share their personal stories of struggle, and they celebrate the benefits of legislation that has been passed thanks to the efforts of previous advocacy. A major component of our grassroots effort is seeing how self-advocates come together with families and professionals in the I/DD field to improve conditions for themselves, and to make life better for all of us.

In the last 30 years, I have learned that advocacy works. Every person who uses their voice to tell their unique story helps to increase awareness for everyone who hasn’t spoken yet. Our movement has been strengthened by countless advocates over the years. For that we are grateful. But we need YOUR voice, too. Share your story with your local representative. I promise that the first phone call might be intimidating, but we elected them to represent all of us. Therefore, they need to hear from all of us!

As 2014 comes to close, and you begin reflecting on what you want to happen in 2015, make a resolution to get active as an advocate. Our community needs you.

Gaining a new perspective

A temporary disability has opened my eyes. It’s amazing how unaware and intolerant so many people still are of individuals who have a disability. It a new experience for me to feel how the community and society treat someone with additional accessibility needs.

For several years, my arthritic hip has been giving me considerable pain. Over the last six months, I have begun using a cane and taking a great many pain killers to ease the aches. I would arrive at my destination and circle parking lots incessantly to find the closest space. If I couldn’t find one close by, I would leave rather than walk across a large lot.  Every activity of daily living is impacted, from climbing stairs, to getting in the car, to accessing public transportation which had been my main means to get to work.

I’m a big proponent of public transportation, and I used to bus into the office regularly.   However, I have recently felt uncomfortable being an “old lady with a cane” needing a seat on overcrowded buses. I am embarrassed to ask another rider to stand while I sit (because not everyone offers!) – and so I have gotten back in my car most days. I recently began using a temporary disability parking placard so that I can actually shop and go into those stores whose parking lots I would circle. It is truly a great benefit if one needs it even for the short run to have accessibility to everyday services. Sometimes I get dirty looks because I don’t appear to be disabled, even though I use a cane most days now.

I’ve been reflecting on this experience and realize my own privilege. Many of the individuals we support at The Arc are not “temporarily” disabled. They deal with these scenarios, and so much more, every single day of their lives. They do not always find curb cuts, or have access to an elevator instead of stairs, or even have push button doors to enter buildings. They don’t have the option to use their personal car and avoid the inconvenience or embarrassment of having to displace other riders in seats.

In December, I’m looking forward to a successful surgery and having full use of my hip again. However, I am grateful for this experience to gain a better understanding of the concerns that affect individuals with a disability. I’ve experienced the unreliability of public transit, the discomfort of taking a seat from another temporarily able person, and the dirty looks I get when I use my temporary disability parking placard. With this first-person experience under my belt, I’ve gained a new perspective and find that my passion to fight for inclusion has been amplified.

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Taking Flight…Again!

Sometimes, inclusion takes extra effort on our part, however that energy usually pays off in a big way. Last weekend, we partnered with Alaska Airlines, The Port of Seattle, and the TSA for our second Wings for Autism event at SeaTac Airport. We made progress together as a community to assure that families raising a child with autism can travel by air more easily.

More than 40 families and 50 individuals on the autism spectrum were able to participate in this unique travel training experience. Before families gathered, we provided three educational programs for the airport and airline personnel and answered many questions they had about autism. It was a joy to hear that their questions often sounded like “what else can I do to include people?” These travel professionals want to be more inclusive. They are genuinely eager for information, and they seek guidance on how they can change themselves. Everyone who attended a training received one of these pins, so look for airport personnel wearing this pin the next time you to to the airport.

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We have found that the personnel at Alaska Airlines, The Port of Seattle, and The TSA (don’t be too surprised!) see themselves as helpers – helping everyone to make the travel experience positive and safe for everyone. I know that The TSA usually gets a bad rap because of their security role (we do want to stay safe after all), but their commitment to this program truly deserves extra applause. One of the TSA officers told us that they offer a program where a family or individuals with accommodation needs can call ahead to ask for assistance from the TSA through the entire process…. cool!  Check out the TSA Cares website at http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions for more information.

Additionally, Alaska Airlines posts our “social story” on their website (http://www.alaskaair.com/content/travel-info/accessible-services/specialservices-developmental.aspx) to help families to prepare their child for the airport and all the transitions, AND you can call them and ask for additional assistance as well. The personnel repeatedly told us to just let them know either ahead of time or at the airport what they can do to make your travel easier.

This was cool, too! Local NPR station KUOW sent report Ruby de Luna to spend the day with us at the airport. Please check out the story to hear about the impact the Wings for Autism program is having to improve inclusion at SeaTac Airport. http://kuow.org/post/sea-tac-kids-autism-take-flight

Inclusion is important to us, and we want to be sure you are included. So please, consider joining us on our next Wings for Autism trip in 2015! (Registration should open in late December.) We are committed to making life better for everyone by working with the greater community to help them become more inclusive. As I’ve said time and time again – what we want for ourselves, we want for everybody. When it comes to travel, we want individuals with I/DD and their families to have more choices and opportunities to enjoy all that our vibrant and diverse world has to offer.

A Labor of Love

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The end of summer is always marked by Labor Day—when everyone is ready for one last hoorah before fall. In all of the celebrations, we sometimes forget the reason for the holiday. Labor Day is a celebration of workers throughout our nation, and the strength they add to our country because of their toil.

I have spent my career working for a goal that energizes my soul and makes a difference in the lives of people with I/DD. I am proud to be part of the social and economic fabric that contributes to the well-being of my community, helping to make the world more inclusive for everyone. It feels great to have purpose each day, and my work has given extra meaning to my professional life. I am grateful for this work.

But not everyone has the same opportunity and access to employment. According to the Bureau of Labor Statistics, fewer than 18% of individuals with a disability are employed in this country. In our field, we know that individuals with I/DD often have difficulty finding employment. They are not included in what is a very important part of the human experience – having work that makes them proud and gives them purpose to help make their communities better. They want to be full tax-paying citizens who do an honest day’s work for an honest day’s pay. Through our advocacy and with the support of other local groups like WISE, ENSO, Goodwill, Community Employment Alliance, At Work (and many others!), we have made great strides in improving this situation in our region. It will remain important that we advocate for more work opportunities for individuals with I/DD who want to, and are fully capable of enriching our community through their work.

As you enjoy this last weekend of BBQs and getaways, remember to celebrate ALL of the people who contribute to a vibrant and successful economy in Seattle, and I challenge you to commit to doing something that will also help others who want to be part of the workforce, too.

Source: http://www.bls.gov/news.release/disabl.nr0.htm

 

 

Traveling Tips for People with I/DD

Everyone needs a vacation, and summer is certainly a popular time to take a break and relax. In this week’s blog post from reader Emma Wilkins, she talks about some of the ways that people with disabilities are receiving better accommodations by the travel industry. Our own Wings for Autism experience at The Arc of King County demonstrated how the Port of Seattle and Alaska Airlines are interested in improving travel opportunities for people with autism at SeaTac. As we begin preparations for our next Wings for Autism, it is evident that people with disabilities will continue to have new opportunities to enjoy vacations of all sorts. Because what we want for ourselves, we want for everyone – and that includes a fun time to relax with family and friends on vacation!


 

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Choosing a Vacation – Considerations for Individuals with a Disability

By Emma Wilkins

Although there is still much work still to be done to challenge discrimination towards those with disabilities, it is clear that the travel and tourism industry is now recognizing the rights and need of their customers with disabilities. Just a few years ago there was a profound lack of companies offering supported vacations for individuals with a disability. Slowly this improved with the introduction of the Americans with Disabilities act, and similar legislation in most other countries. These anti-discriminatory laws have helped people with disabilities to have the same experiences as everyone else. It appears now that some savvy companies realize this gap in the market, and now there are lots of travel companies catering for all types of vacationers.

What types of vacations are available?

With a just a little research, it appears pretty much anything and everything is possible! With a large range of destinations, both in the US and internationally, all types of adventure, sight-seeing, and cruise vacations are available. They offer various levels of support, enabling independence and support for individuals with intellectual and developmental disabilities.

Advice for parents

Perhaps intuitive, the main piece of advice is to plan ahead—with your child’s needs in mind. Although you cannot plan for every eventuality, a little preparation will go a long way to minimize any problems you may have while away. Several companies cater to people with a range of abilities, so everyone in your group can enjoy the same experiences together.

Regardless of the travel company used, parents should notify them of any additional needs in advance. With advanced knowledge, many companies can provide extra services to assist individuals with special needs. Additionally, knowing what is and isn’t available in advance will give you realistic expectations before you travel, relieving stress and making the trip more enjoyable for everyone.

How are you getting there?

Whether it is a family trip that you are planning or some much needed respite care, there are many options and assistance available. Some organizations offer a door-to-door service for your convenience and peace of mind. You may want to consider how you travel to your destination in as much detail as the location itself. If travelling by air, you could consider smaller airports rather than the larger international ones. The homeland security website has advice on going through the security checkpoints, and they recommend calling 72 hours ahead to learn about special arrangements that are possible to minimize any problems. Travelling at quieter times of day, or avoiding peak seasons may also make your trip easier. Wherever possible, try and keep some ‘normal routines’ in place. For example, try to be consistent with meal times and bed times, and be sure to bring your child’s favorite games consoles, iPod, or DVD player. Additionally, items of special importance (such as a favorite stuffed animal) should be kept at hand to help diffuse stressful situations.

The same rights as anyone else to enjoy vacation time

Everyone, regardless of disability, has the right to enjoy the experience of travelling to visit new countries, climates, and cultures. The benefits and enjoyment of such experiences outweigh the difficulties of such an undertaking.

For many people their vacation time is precious and much anticipated all year long—a chance to escape the stresses and strains of everyday life. People with disabilities and their families are also in need of this special time to build new memories and distress together. It is exciting to see that the travel industry is embracing inclusion and providing a better experience for travelers with I/DD.

 

The Privilege of Work Worth Doing

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“Being privileged to work hard for long hours at something you think is worth doing is the best kind of play.”  – Robert A. Heinlein

Earlier this week, I had a conversation with a colleague in the for-profit world that has been rattling in my mind ever since.  He indicated that working with his normal business clients was stimulating, but he was grateful to complete work for The Arc of King County because it felt like work worth doing. Being a science fiction fan, I thought about Heinlein’s quote and thought, “I am fortunate to play everyday”.

Those who choose to work in the nonprofit sector are engaged in hard work that is worth doing. I think it is especially true for people who work with intellectual and developmental disabilities. The struggle for civil rights in the disability field continues, but we are edging closer to full inclusion and acceptance every day. We aren’t asking for anything outrageous. We simply want for ourselves exactly what we want for everyone else.

There is no doubt the work is hard and long. Some days have been heartbreaking, as we seem to take a step backwards. However, some days bring tears of joy to my eyes as I witness the progress we are making. I am so very privileged to be part of this work, and I am delighted to have the chance to “play” with all of you as we continue to create a more inclusive world for everyone.  

PUSHing for Change

People have a lot to say about “kids” today, and not all of it is kind. However, I’ve recently had a chance to meet several young men who I want to brag about. It’s true that one of them is my son, but I think you’ll agree that it’s worth my crowing about him and his fraternity brothers.

On Wednesday, 27 young men from Pi Kappa Phi chapters from universities around the country departed from Seattle along with their wonderful support crew to complete a trans-American trek to Washington, D.C. on bikes. Their 4,270-mile Journey of Hope will be punctuated by the reason for their trip – “friendship visits” with people who have disabilities from all across our country. Their visits, and their very long ride, will raise money and awareness for people with disabilities. The men on this ride and two other groups departing from Los Angeles and San Francisco have raised nearly $500,000 this year alone!

The Arc of King County had the privilege of hosting the young men for our very own friendship visit on Tuesday before they left on their summer adventure. The young men arrived promptly at 1pm to meet with people from our Supported Living Program and Banchero supported living program for a picnic lunch at the Olympic Sculpture Park. Everyone enjoyed having a delicious lunch in the beautiful sun shine, however the real highlight for me was listening to the conversations that took place between these men and the people we serve. They talked about all sorts of subjects—favorite movies, vacations, hobbies, and pets to name just a few—and they really learned a lot about each other.

As I have reflected on that afternoon this week,  I can see how their Journey of Hope will be changing minds. They will not only be changed personally by the journey and influence how some people still view people with disabilities, but they will also change opinions that “old people” like me have about this younger generation. They are change agents who are making a difference by taking action, and I am very proud that one of those young people making our world a better place for all people to live, work, and play is my son.

If you want to follow the Journey of Hope, check out their team blog at http://pushamerica.org/johtajournal.aspx.

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