The Five “P”s for Reducing Holiday Stress

We can’t promise you a stress-free holiday season any more than we can promise you a white Christmas, but there are some common sense tips which can help children with disabilities (and their parents!) make it to the end of the holiday season relatively unscathed. We call them the Five “P”s

Gingerbread CookieWe should stress – no pun intended – that when you mix family gatherings, religious or cultural traditions, crowds, noise, lights and sometimes travel, no one is immune to the stress. It’s not just a child with autism who may become over-stimulated or a child with a physical disability who may be exhausted or frustrated. The annual holiday season “melt-down” is to be expected from children of all types and abilities, and maybe some grown-ups too.

The key is managing expectatons. Knowing what is most likley to cause stress for your child during the holidays and having a plan for that eventuality is the easiest route to minimizing problems.

PREPARING

It starts with preparing both your child and your family for what’s to come. Start early with holiday stories, books and movies to help your child understand what it’s all about. Practice traditions in small doses such as a trial-run at a formal sit down dinner with just the immediate family before you add in aunts, uncles and cousins. Take a trip to church or synagogue and explain what will be different about the ceremonies during the holidays. Play holiday music around the house or experiment with lighting candles if that will be something new for your child.  If your child uses a walker or a wheelchair, practice navigating through Uncle John’s house or whereever you are likely to spend time during the festivities if you can.

PLANNING

Then have a solid plan for when things don’t go as expected. Set up an escape route or a safe space so the child can retreat if things get to be too much. Let your friends and relatives know that this isn’t a big deal and there’s no need to make a fuss if your child needs to take a break. Bring a favorite toy from home, a snack, or an iPad to offer your child when they don’t want to – or can’t – go with the flow. Reassure your child that they can take a break anytime they wish and go over how to do so – maybe even set up a code word so your child can signal you that they are having a hard time without drawing too much attention to themselves.

PARTICIPATION

Make sure there is a way they can participate. Scope out venues and ask about holiday gathering plans ahead of time to find a way for your child to be included in the festivities to whatever extend they feel comfortable. Will they be able to be placed at the same table with everyone during dinner? Will they have a good view of the holiday pageant? Will they be included in games with other children? Figure out how this can happen and prepare any necessary accommodations ahead of time.

PAMPERING

Be sure to have everything necessary for your child to be as comfortable as they would normally be at home. Don’t force outfits that are itchy, or dress shoes that are tight just for the sake of appearances. And, don’t expect them to stay up far later, walk far further or stand or sit far longer than they normally would just because it’s a “special occasion.”

PATIENCE

Don’t rush. And, don’t overbook! Tell your relatives and friends that you expect them to be flexible. If you miss the beginning of services or don’t stay for dessert, that is just a fact of life that isn’t going to ruin anything. For a child with a disability it may take longer to get ready, or to get from one place to another and things will simply have to go at a slower pace. The more relaxed you are about time, the more relaxed your child will be as well.  After all, the season is about so much more than gifts and parties. It’s about celebrating together as a family – a family that includes a child with a disability.

 

Happy Holidays!

 

USAID Gives $2.2 Million to UCP Wheels for Humanity

UCP Wheels for Humanity (UCP Wheels), a subsidiary of United Cerebral Palsy of Los Angeles, Ventura & Santa Barbara Counties, has received a $2.2 million grant from the United States Agency for International Development (USAID) and JSI Research & Training Institute to support Project CLASP, a project which will improve and streamline the supply-chain for wheelchairs worldwide and supply over 15,000 wheelchairs to those in need around the world.Wheels for Humanity

CLASP (Consolidating Logistics for Assistive Technology Supply & Provision) is a two-year project in collaboration with ten international partners in Indonesia, Philippines, Georgia, Romania, Nicaragua, El Salvador & several other nations to improve the quality, selection and volume of wheelchairs provided in each country. In partnership with supply-chain experts Jones Lang LaSalle, UCP Wheels will consolidate inventory from five international manufacturers in a single hub, so that a variety of locally appropriate wheelchairs can be acquired from a single location.

“UCP Wheels for Humanity’s is the ideal organization to lead this project,” says Sue Eitel, Senior Rehabilitation Advisor at USAID. “Their proven track record of successful wheelchair provision projects and international partnerships makes them an industry leader.”

“Project CLASP addresses a serious barrier confronting the wheelchair industry which leads to people with disabilities worldwide not receiving wheelchairs that meet their personal needs,” says UCP Wheels Chief Executive Officer, Ronald S. Cohen, Ph.D. “This project will allow UCP Wheels and other organizations to give the life-changing gift of mobility to more people in need, more efficiently.”

UCP Wheels for Humanity was founded in 1996 to increase access to mobility for children and adults with physical disabilities who live in developing countries. UCP Wheels provides appropriately fitted wheelchairs and quality of life services to more than 6,000 individuals each year and acts as an advocate and capacity-building partner to local organizations, creating sustainable, community-based systems that support long-term change.

 

Design-athon Draws Innovators

Enabled by Design-athon: DC Edition drew a diverse crowd of creative innovators excited by the potential to solve everyday challenges faced by people with disabilities. More than 160 people from as far away as India, Boston, Atlanta and San Francisco registered to attend the kick off event held Wednesday evening at the Martin Luther King Memorial Library. Lightning talks aimed to introduce attendees to some of the unique challenges faced by people with disabilities and some of the inspirations that led to innovation, while a social hour hosted by Design Thinking DC introduceDay 1 Team Meetingd participants to each other in anticipation of the workshop ahead.

Adrienne Biddings, Policy Council for Google talked about Google’s cadre of developers and engineers, many of whom had little knowledge of disability but who are always trained in accessible design within a month of joining Google’s team.

Brett Heising, the CEO & Founder of BrettApproved, related his own personal experiences as a person who uses a wheelchair in finding accessible travel accommodations – experiences which let to his start-up of a website offering reviews of destinations for travelers with disabilities.

Maria Town, founder of the blog CP Shoes, read aloud her “love letter” to shoe brand Converse and creatively brought home the love/hate relationship people with cerebral palsy sometimes have with their shoes and how an item others take for granted can play an outsized role in the life of a person with a disability.

Diego Marsical, founder of 2Gether International and a paralympian gave the crowd of 150 at the library a sense of the international disability community and the importance of the diversity of people with disabilities.

Phillip Reeves of DC Department of Small Business Development encouraged ambitious innovators to go for government funding, reminding them that the “Roomba” was once considered a weapon  to prove  a point about how government agencies such as the Department of Defense a are ready and able to fund high risk/high reward projects.

The talks ended with John Salmen, President of Universal Designers & Consultants, Inc. with an enlightening outline of the concept of universal design, or design for all.

Early the next morning 10 teams of eight participants each gathered at Google to start the Deisgn-athon workshop which would end with workable ideas to improve the lives of people with disabilities. The teams were greeted by Bob Gootzit from PCS Engineering 3D PrinterPSC Engineering 3D Printers3_D Printers

 

 

 

 

 

 

With access to a Cube Pro Duo and Cube Gen Three from PCS Engineering and the assistance of two experienced 3-D printer operators, the teams would have the latest technology to help bring their ideas to life.

Working in the hallsBut before they were able to take advantage of the printers, they first had come together as a team and come up with an idea. Mentors with disabilities and team facilitators kept teams on track, leading the teams through empathy exercises designed to simulate some aspects of certain disabilities. Often the empathy exercises led to brainstorms about how to tackle the very challenges the teams had just experienced.

By Friday afternoon, a  judge’s panel including UCP Chief Operating Officer Chris Thomson, Google’s Policy Council Adrienne Biddings, and Brett Heising, founder of  www.brettapproved.com, was evaluating 10 minute pitches from each team, who tried to convince the panel their product idea should win.

Judged on their idea’s innovation, feasibility, marketability and other factors, the teams sweated under the lights on a small stage at Google’s state-of-the-art D.C. offices. They were peppered with questions about how the products might work, who they might serve and how they might go about bringing them to market.Sketching 2

“If you plan on keeping your profit margins low, then what’s in it for an investor?”

“Have you researched the cost of raw materials?”

“How often would this software be updated?”

Tough questions for a skilled entrepreneur, much less a team of diverse participants who only met each other Wednesday night and had less than 36-hours to dream, develop and dig in to the nitty-gritty of creating their prototype and their pitch.

In the end, three teams walked away with praise and prizes from Google and TechShop.

The Judges’ Choice Award was presented for the concept of a browser plugin for Chrome to add on-demand definitions for idioms designed for people with autism and/or English-language learner. (created by Sirjay Kasturi, Sudhita Kasturi, Sun Chee Blair, David MacPherson, Amnah Azizi, Susan Herngenrather, Lindsay Schultz and Celene Moore). Each team member was awarded a Google Chromebook.

DSC_4621

The People’s Choice Award was presented to the team who came up with clip bracelet designed to provide stability for a hand with low-dexterity (created by Emily Flax, Clarice Torrey, Benjamin VanSelous, Jessica Bonness, Jessica Denson, Mike Ellis and John Levy). Each team member was awarded a membership to TechShop.

People's Choice

Best Prototype was awarded to the 3-D printed design for a relatch tool for keeping public bathroom doors with broken latches closed (created by Bita Salehi, Ken Ward, Mully Zacharia, Bagais Reem, Michelle Bendit, Jacob Johnson, Mallory Anderson, and R J Heller). Each team member was awarded a Google Chromecast.

Best Prototype

Other ideas included an ATV-style modular customized wheelchair, a compression sock using biometals, a shoe key, a magnetic opener, a “smart” pill dispenser, a commuter app to aggregate data for people with disabilities and an app to help caregivers record instructions for later review.

Design-athon is an initiative of United Cerebral Palsy’s Life Labs, which fosters innovation in design and technology for people with disabilities and is held each fall. Find out more about UCP, Life Labs and Design-athon online.

 

Special Thanks to our Sponsors and Partners:
Google, CareerBuilder, TechShop, Sprint Relay, CEA Foundation, Sugru, PCS Engineering, Design Thinking DC, George Washington University’s Corcorcan School of the Arts, Marymount University, Mt. Ida College, and Coroflot

 

 

 

#HalloweenWithoutLimits Contest Crowns Most Creative Costume

In October, UCP hosted a social media contest to find the most inventive, creative and limitless costume for children (or adults) with disabilities. Between October 6 and October 30, more than 50 ingenious entries appeared on UCP’s Facebook and Twitter pages where they competed for “votes” – the most likes, shares and comments – using the hashtag #HalloweenWithoutLimits.

Each of the five winners pictured here will receive a 5-lb. bar of Hershey’s Milk Chocolate and will be featured in UCP’s Full Spectrum e-newsletter on Monday, November 3. The pick for Most Creative Costume made by UCP’s national staff will also win a chocolate bar and be asked to tell the story of their costume on the Voices of UCP blog.

 

Out of more than 16,000 total votes, the winners are:

Dorothy/Wizard of OzThe Little MermaidET Phone Home

 

Princess with Horse-Drawn CarriageBatman

Most Creative Costume Voted on by the UCP National Staff Is: 

Lost Her Head!

 

Honorable Mentions: 

SpidermanDay of the DeadHonorable Mentions

Snow White  ESPN

You can see the final contest entries in a photo album on our Facebook page.

Thank you to our partner, The Hershey Company, for donating the prizes!

Hershey's, The Hershey Company

From an Orphanage in Africa to a Life Without Limits

For National Adoption Awareness Month, UCP would like to introduce you to the McGee family, including Israel, a young boy with a cerebral palsy who was adopted from Ethiopia. Rebekkah McGee now writes a blog about their family and their adoption story, which you can follow at http://yestoadoption.blogspot.com/.

 

WhIsraelen Rebekah and Will McGee traveled to Ethiopia to meet their soon-to-be-adopted son Israel over two years ago, they never dreamed they were actually embarking on a completely different type of journey. Adopting internationally, they understood that there may be difficulties since Israel was coming from an institution, but they didn’t know exactly what to expect.

“We were young, we had only been married a year (when we decided to adopt). But we knew we wanted to make adoption a priority. It was important to us,” said Rebekah McGee.

Even at four months old, when they met Israel for the first time in Africa, they could tell that he had some developmental delays, but having never been parents before, the McGee’s didn’t know what that meant for the future.Israel2

In May of 2011, when Israel was seven months old, Rebekah and Will brought him home to the U.S. By the time he was nine months old and not yet rolling over, a church friend recommended the family to United Cerebral Palsy of East Central Alabama for early intervention services.

“We had no idea as new parents,” Rebekah McGee said about Israel’s disability. “But I’ve had 2 ½ years of supportive help with UCP. The team there has made me feel more competent that I had the skills I needed as a mother.”

“When they say it takes a village to raise a child, well, UCP is part of my village,” she said. “They have cried with me on the hard days. Anytime we have needed something, they have helped. They are so much more than just the services they offer.”

The McGees have taken advantages of all of those services from early intervention therapy to the daycare Israel is now enrolled in. And, earlier this year, Israel was featured in UCP of East Central Alabama’s annual fundraising telethon. The McGees recently got more details on how parts of Israel’s brain had been affected and a new diagnosis. Although the UCP team had not worked with a child with that specific diagnosis and Israel was only two months away from aging out of early intervention services, the staff jumped on researching the diagnosis to figure out how to best care for him.

“The reality of having a special needs child is that you see a lot of doctors and specialists,” said Will. “We have had to go through so many specialists to find someone who connects with Israel. It’s so refreshing that at UCP we don’t have to do that. Everyone connects. He has a relationship with everyone there.”

Israel now has a one-year-old sister, Edith, who does not have a disability and the family is thriving. Israel has come a long way thanks to the therapy and services he received. He is not quite talking yet, but walks with some assistance. There were difficult times, but Rebekah is glad UCP set the bar high for him to reach.

“Just the other day,” recalls Rebekah, “I was talking to his UCP service coordinator and she said to me ‘We have never put limits on Israel…and we never will.’”

 

family picture Oct 2014

What Does it Take to Live a Life Without Limits?

Here’s the personal story of Ula, who has challenges due to cerebral palsy as well as the normal ups and downs common to many people with and without disabilities. Her secret to living a life without limits? Taking care of herself and pursuing the things that make her happy, rather than focusing on other’s expectations. 

 

My name is Ula, I’m 34 years old and I have mild cerebral palsyUla Thepsouvanh

My mother was pregnant with me when she came to Canada from Laos. I was born with the umbilical cord wrapped around my neck and was pronounced dead for 5 minutes.

My parents, whom I love very much, kind of wrote me off. They thought that they would be stuck caring for me until one of us dies. They were fresh off the boat from Asia when my mother gave birth to me. So they had a lot on their plate just adjusting to life in Canada with my grandparents and my brother.

I have tremors all though my body and speech impediment for which I took speech and physical therapy. When I was a teenager I felt that I was “too cool for school” and quit therapy because it was boring. It was one of my regrets in life. I didn’t see the value of therapy until it was too late.

When I was 17 years old I wanted my driver’s license. It took me almost a year to convince my parents to teach me to drive and another few years before I decided to take my test. I failed my first time but passed the second time. I remember coming home and telling my parents I got my driver license, my parents and I started to cry. They were tears of joy and shock. It was one of my proudest moments. I did not think I was capable of getting my driver’s license because of my uncontrollable tremors. Surprisingly my tremors did not play a part in the way I drove.

I attended college for three years studying human services and Fetal Alcohol Spectrum Disorder (FASD) support work. I received assistance from an employment service for people with disabilities, which found me a job at the YMCA starting in a preschool summer day camp. I have been there for eleven years now working at a youth shelter as a counselor.

I was 26 when I met William, the love of my life, and we married three years later. We have travelled the world together. William is musician and a professional artist and no, he does not have a disability. When we were dating we bought a karaoke machine, which we used almost every day for six months. One day William told me: “Babe you’re a good singer and have a beautiful voice. All I can think is “okay no I don’t, did you forget that I have CP and a speech impediment?” After we got married we decided to take singing lessons together. Our voice coach, Cesar Aguilar, trained us in classical and in opera.Ula Photo 2

“Working with Ula was a wonderful rewarding experience. The lessons we had with her and her husband Will were always filled not only with singing but also with laughter and joy,” says my voice coach. “Ula always showed up to lessons with a great attitude and ready to have fun and learn new songs. Although sometimes overwhelmed by some of the songs or vocal and breathing exercises I gave her she always put her best foot forward and tried everything I asked. She was always aware of her speech impediment although it never interfered with her ability to sing.”

I asked my musician husband to teach me guitar and he suggested trying the ukulele because it’s small and only has four strings. I have been playing for four years now. I have always liked music and knew I had an aptitude for it. Someday in the near future I could see myself preforming live. I want to start a band with other women with disabilities.

For me, having CP means I am committed to self-care everyday. My life is structure; I wake up, do yoga, I go to the gym, play ukulele, and visit my grandparents. I do this everyday before going to work in the evening. I have to take care of myself physically and mentally. Taking care of myself gives me confidence and that confidence curbs my tremors.

I think there is always going to be a part of me that is bitter and jealous toward people that don’t have disability. I do have dark days. I think I don’t mind having cp. I think it helped shape who I am today; I like who I am. However I sometimes wish that people would just keep their thoughts and question to themselves. I don’t know how many times I get of accused of being drunk when I’m in public. There was one time I went to a grocery store. Three cashiers followed me out and tried to block me from getting in the car because they though I was intoxicated and threatened to call the police. I had to explain to them that I have disability. I was humiliated and angry I spent hours and hours crying. I get weird looks and I hear whispers – “why does she talk that way.”

But, it is hard to picture my life without CP. What kind of career path would I’ve had taken? What kind of a relationship would I have with my friends and family? Would I be in the popular crowd like my siblings? Cerebral palsy or not, everybody has limitations. These limitations are determined by the body and mind and not by other people. It’s up to me and you to test those limitations to the best of our abilities.

Hey Candidates, People with Disabilities Can Help Elect You…Or Not

How much do you know about the voting habits of people with disabilities and their families? Aren’t they mostly Democrat? Surely they don’t really get out to vote much and they can’t really impact the outcome of an election. They don’t really care about the big issues, just things that affect their disability services. Right?Voting

Wrong. United Cerebral Palsy partnered with the HSC Foundation, Youth Transition Collaborative and other leading disability nonprofits to dig into the profiles of Americans with disabilities and their families and to find out how much they participate in our electoral system and why they vote the way they do. The results may be surprising to some and should serve as a wake-up call to candidates who might disregard this large and important group of voters.

First and foremost, there are nearly 58 million Americans who fall under the Census Bureau’s classification of disabled, including people with chronic conditions. The Census Bureau estimates 69% are registered to vote, just a few percentage points shy of the general population. But while overall voter turnout among registered voters in the last Presidential election was only 57%, this group turned out to the tune of 72% – far higher than other demographic groups. And, 61% percent reported that they plan to vote this November. Add to that number immediate family members who may share their political opinions and what have you got?

Not only do they vote in high numbers, they are very passionate about their issues and engaged in the political process. Eighty-four percent say a candidate’s record on strengthening disability supports and services is important to them and they’re willing to reward candidates with good records at the ballot box (85%). They’re also very likely to penalize candidates who have poor records on disability issues – 87% said they would vote “against” a candidate they would otherwise support if that candidate voted for cuts to disability services and support. Younger people with disabilities (18-30) are somewhat more passionate and quicker to punish candidates for non-support.

However, in general, disability-specific issues did not top their list of issues they considered very important. Like the rest of America, the economy and healthcare ranked #1 & #2 on their list of priorities. Disability issues came in further down the list after education, national security, taxes and other topics frequently debated in politics.

Like the rest of America, people with disabilities are politically diverse with 30% Democrat, 25% Republican and 30% Independent. Those party affiliations come very close to the general population which is described as 31% Democrat, 26% Republican and 41% Independent.

Unfortunately, one in five people with disabilities said they faced a significant barrier in voting in the 2012 elections, citing such issues as transportation, confusing ballots and accessibility to voting places.

At the time of this survey, only 21% of this group approved of Congress’ efforts to improve the lives and conditions of people with disabilities. About 41% approved of President Obama’s efforts. And while only 12% said they felt like they were part of a true movement to change the status quo for people with disabilities, another 19% said they wanted to be. Couple with their passion for our political process, their massive numbers and high turnout, they could one day be a deciding factor in some races. The political world would do itself a tremendous favor by taking notice and courting the support of this important, but sometimes invisible, constituency.

Don’t forget to vote November 4! It can make a difference 

This 2014 survey was designed by maslansky + partners, a non-partisan polling and research firm based in New York, Washington, London, and Paris. It was conducted by Research Now, a well-established, U.S.-based non-partisan survey house. Please contact press@ucp.org for more information. 

Accomplished Cross-Sector Leader Named UCP Chair

Effective October 1, United Cerebral Palsy’s Board of Trustees welcomed new members and several new officers to help lead the national nonprofit organization for people with disabilities and their families. UCP has more than 80 affiliates in the U.S. and internationally.

Gloria Johnson-Cusack

Gloria Johnson-Cusack was elected as chair after more than a decade supporting the UCP network, and brings to  the national board more than 20 years of deep, cross sector experience. Currently, she serves as Ex

ecutive Director of Leadership 18, an alliance of Chief Executive Officers (CEOs) responsible for leading some of the country’s largest and most well respected charities, non-profits and faith-based organizations. Member organizations serve over 87 million people annually and represent $59 billion in total revenue. She also is a board member of the Firelight Foundation which supports children and families affected by HIV/AIDS in Africa.

Previously, Johnson-Cusack served as a Senior Vice President at GMMB, a D.C.-based strategic communications and advertising firm focused on cause marketing. In this role, she advanced issues on behalf of key nonprofit organizations and foundations. In the public affairs arena, Johnson-Cusack served as Director of the Office of Congressional Relations at the Peace Corps, Special Assistant to the President in the White House Office of National Service, and Director of Constituent Relations at the Corporation for National Service. She was Chief of Staff for the D.C. Office of the Inspector General and was policy advisor to Congresswoman Eleanor Holmes Norton and Senator Albert Gore, Jr. 

In 2005, Gloria led the strategic and creative team responsible for developing UCP’s “Life Without Limits” brand identity to enhance the international positioning of the organization. She also worked with UCP leaders to develop the strategic vision and plan for National Big Sky Visioning Sessions and related outreach to explore ways communities can work together to integrate people with disabilities fully into the fabric of society. Most recently, she helped lead the strategic planning committee which advised about the future direction and business model for the national office and conducted related outreach to affiliate CEOs and their board members to invite input.

Her expertise will add to the talents and strengths brought by new Vice-Chair Eric Hespenheide, who retired with more than 25 years of financial experience as a senior partner Deloitte & Touche, LLP and new Secretary Pamela Talkin who is the first woman to serve as Marshal of the Supreme Court of the U.S. overseeing the security and operations of the Supreme Court building. They join Melvin “Chip” Hurley who has over 30 years of healthcare and management experience in accounting, auditing and consulting. Each officer was serving as a trustee before being elected.

“I am thrilled to take on this new role leading one of the most outstanding boards I have ever encountered. They are passionate and laser-beam focused on smart strategy. Each of us will draw from our strong, diverse perspectives to advance the vital work of the UCP network that helps so many people world-wide.”

“UCP is incredibly excited to see Ms. Johnson-Cusack take this key position on our board,” said UCP President and CEO Stephen Bennett. “Her knowledge of the UCP network, her insight into how nonprofits can and should work and, most important, her vision will be critical to continuing the strategic changes which began under Woody Connette’s leadership. 

New members of the Board include Seth Harris, Pablo Chavez and Ouida Spencer as trustees. For more information about the board including biographies for all members, visit www.ucp.org/about/board

Help UCP Win $25,000!

Thanks for visiting our page. You can help United Cerebral Palsy win up to $25,000 for people with disabilities and their families by visiting MetLife on Facebook and liking, commenting on and sharing one of the posts featuring UCP.

MetLife Center for Special Needs PlanningThe MetLife Foundation and MetLife Center for Special Needs Planning has generously offered to give UCP $2 for every like on that post as part of the #MetLifeCares campaign for disability employment awareness.

All you have to do is take action and a donation will go to support the advocacy work UCP does at the national level as well as valuable programs such as My Child without Limits and UCP’s Life Labs.

Thank you for your help! 

Young, Queer and Crippled: We’ve Got Spirit Too

Andrew Morrison GurzaTo commemorate Spirit Day, the following is a guest post from a noted blogger and disability advocate who is also gay and a person with a disability. Andrew Morrison-Gurza is a Disability Awareness Consultant with an MA of Legal Studies specializing in Persons with Disabilities. Andrew also has the experience of living as a person with a disability. He understands that the concept of disability is one that many individuals are very new to, and they may not feel comfortable to discuss it. Through his work, Andrew aims to give everyone the opportunity and most importantly, the permission to start the conversation by discussing his day to day lived experience and making disability accessible to everyone. About the terminology he uses in his post, he notes “Cripple is a term that I have reclaimed as one of empowerment. It is not the politically correct terminology for Persons with Disabilities, but it is how I self-identify.”

 

By Andrew Morrison Gurza

I was sitting in my 11th grade math class, and there he was: an absolutely stunning spectacle of man (or, at least what my 16 year old brain considered to be “man” at the time).   Everything inside me told me to go talk with him, my palms were sweaty, his smile made me melt to the floor—it was now or never.  I had just come out of the closet, and based on all the TV and movies I had seen, now that I had admitted my sexuality, my quest for a long term partner would be that much easier.

As I pushed the joystick on my 300-lbs. wheelchair towards him, I began to realize that it wouldn’t be that easy, and all of these thoughts about how I was ‘too disabled’ began to flood my brain. I never did tell my high school crush how I felt about him, but the feelings of uncertainty and fear with respect to my disability lingered. The more and more I got messaging from the media reminding me that “it was okay to be gay,” I would also wonder in the back of my mind, “yes. But is it okay to be gay and disabled?”

Spirit Day is a brilliant initiative designed to combat bullying and homophobia against LGBTQ+ youth. With this in place, Queer youth are told that they matter, and that they have a voice in our ever changing queer-scape. I think that Spirit Day also allows for us to remember the queer voices that we don’t often hear about. For me, that is the queer cripple.

It is important to remember that they exist too, but they may be navigating their queerness in entirely different ways: with Personal Care Assistants who help them with everyday activities many people take for granted, struggling with feeling different amongst the different, and having very few role models who embrace both their disability and their sexuality openly.

Imagine feeling burdensome to everyone because everywhere you look, you are not at all represented. Imagine worrying that you might not get your basic needs met if you come out, and imagine worrying that you might never be loved – all because you sit rather than stand.

It is in our youth where changes in the LGBTQ+ experience will truly come, and so it is our young LGBTQ+ community who must be introduced to the Queer Cripple. We must teach them that it is okay to have questions about disability, and it is okay to be a little bit scared of what they don’t understand.  We must show them now, that all bodies have value, so that by the time they start accessing their sexuality in real-time, the good looking guy in a wheelchair will be someone they will approach as they would anyone else – perhaps with questions and queries, but without fear and fakery.

Spirit Day can also ensure that we celebrate disability in the Queer community. By actively discussing disability (and all that comes with it) on Spirit Day, we can show young Queers with Disabilities that there is indeed a place for them, and they will be a part of this bright rainbow that we all are trying to shine under.

Thank you for reading! If you want to find out more about the work I do as a Disability Awareness Consultant, or find out how I can “make disability accessible” to you through blogging, presenting or speaking, please head over to www.andrewmorrisongurza.com