By Dang U. Koe, ASP Chair Emeritus
Sa Istrukturang Accessible, Lahat ay Able (Structural Accessibility is Ability for All).
This is the theme for this year’s celebration of the National Disability Prevention and Rehabilitation (NDPR) Week. Said theme is aligned with the mandate of Department of Public Works and Highways in the implementation and promotion of the accessibility programs of persons with disabilities for a barrier-free environment. It is also in pursuant of Batas Pambansa 344, otherwise known as the Accessibility Law.
A barrier-free environment for PWDs is synonymous to parking spaces, sidewalks, ramps, railings, elevators, and other architectural facilities or structural features that reasonably enhance the mobility of physically disabled persons.
What about persons with autism (PWA)?
In general, PWAs do not need structural accessibility. But yes, they need other “infrastructures” for their effective integration into mainstream society.
Angels Talk had the privilege of interviewing Valerie Paradiz, PhD, on this matter. Valerie speaks internationally on topics relating to Asperger’s syndrome and autism, including strengthening advocacy skills in parents, professionals and individuals on the autism spectrum.
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| Ms. Valerie Paradiz during the Autism Beyond Border Conference |
A former member of the board of directors of the Autism Society of America, Valerie co-chairs the Autism Society of America’s Panel of Individuals on the Spectrum and serves as an advisory board member to the US Autism & Asperger Association. Her new book “The Integrated Self Advocacy (ISA) Curriculum”, published by Autism Asperger Publishing, relates to building strong educational programs and advocacy skills for students with ASDs in public and private school settings.
Valerie speaks from experience — she is a parent of a young man with autism, and was diagnosed herself with autism at age 40.
Why did you say that autism is “invisibility” during your World Autism AwAwareness Day speech in the UN?
I said that for two reasons. First, it is sometimes difficult for others to “see” autism in those of us who are diagnosed with it. This is because — particularly for those of us on the spectrum who are verbal — we don’t have obvious signs of the condition, until perhaps, you have a longer conversation with us.
Second, autism (and by this I mean the entire spectrum) was a latecomer to the disability advocacy movement. We are still working hard to raise awareness in mainstream culture about what autism is, what autistic people are like, and what we need to be more integrated participants in society.
Describe the Autism Awareness Movement. What does it mean?
To me, the movement means that the world still needs to know more about autism. Particularly, there is a need for more infrastructures for individuals with autism across the life span. Until we have achieved that, the “movement” will be necessary.
How do parents and self-advocates protect the civil rights of persons with autism?
We must collaborate to ensure that we are there for one another as organizations and as individuals.
We must work toward having more legal supports for individuals with autism whose civil rights are violated at work or in the community.
We must also educate others how to support individuals with autism and what they should do as citizens to assist us in preserving our civil rights.
How do we make the government listen and take us seriously?
One good way to make the government listen and take us seriously is to include individuals with autism in your visits to representatives. When politicians hear the direct voice of people with autism, they get an immediate and real sense of their needs and of this way of life.
Families’ voices are also crucial. When families and individuals on the spectrum can work together to develop advocacy agendas, this can be very powerful. We have witnessed this at the Autism Society of America, where there are three people with autism on our national board of directors. ASA has also established an advisory board called the Panel of People on the Spectrum of Autism (PSA) which advises the national board of directors. The PSA is comprised entirely of people with autism.
Describe the culture of autism
Oh my goodness! That is a BIG topic! I guess the best way to describe a culture of any kind is that is represents a group of people who have a shared history and language.
For autistic people, our language might be unheard of or not evident. Yet, when we are together, we do have a feeling of being among kindred spirits or “at home.” Culture also means having a sense of belonging. It is a very powerful moment when someone on the spectrum meets others on the spectrum for the first time. We learn so much from one another!
Describe the future of autism
In the future, I see more of us on the spectrum integrated into our communities more seamlessly and with tremendous understanding from those around us. We are still seeking for that “invisible ramp.” It is already a federal mandate in my country to provide access to individuals using wheelchairs in most public spaces and buildings. For autism, we are also attempting to educate others about our “ramps,” most of which have to do with sensory and social sensitivities
and challenges.
As society begins to provide that ramp (or accommodations), it in turn will become more humanized and sensitive to the autism culture. This is very exciting for me to think about.
I also see more of us, across the spectrum, working in fulfilling jobs. This to me is the next frontier in autism advocacy! The time has come!
How do we encourage others to come up and address the issues of Autism Rights? Please give practical tips.
The most powerful thing one can do is share a story. Sometimes these stories are difficult for others to hear because they reflect back to the culture at large, how much more it has to grow in order to treat individuals with autism and other disabilities with respect. Thus, it’s also good to intersperse stories of hardship or injustice with stories of hope and accomplishment. Whenever I share my employment story, for example, I like to also share how that event inspired me to push harder for all of us on the spectrum who want meaningful work.
There are eight pending autism bills in the Philippine Senate. How do we make the legislators take us seriously? Some practical tips please, and share your experiences in the US.
Develop relationships with those legislators and tend to them carefully and well. Expect that it will take time to foster these relationships, but stick to it.
Find out if any of your legislators have family members or close friends affected by autism. Will they work with you to advocate for these bills?
As much as possible, include individuals on the spectrum when you correspond or have meetings with your representatives, even if it’s by way of video, or a work of art that someone on the spectrum has created.
Finally, invite them to your advocacy events and conferences; ask them to be keynote speakers or to be present for a Town Hall meeting where families and professionals may ask questions and share their stories.
How do we, as parents, rally others to advocate? Can you give us practical tips on your experiences in the US on how to go about this?
I have recently found out that rallying the younger generation can be extremely powerful. I discovered two (non-autistic) girls in our local high school who created an autism awareness club.
The unusual thing about their club was that not only did they offer friendship to fellow students on the spectrum attending their school, but they also wanted to model for their neuro-typical peers how to treat students in special education with respect and kindness.
They even managed to get the school’s code of conduct amended, so that any student who said derogatory things about a person with cognitive differences would undergo the same disciplinary action that the code stipulated for racial or other discriminatory remarks or actions.
Today, we are celebrating these young women as future leaders, inviting them to present workshops in schools and even train teachers! It is very hopeful and very powerful!
ASP joins the nation in celebrating the National Disability Prevention and Rehabilitation Week. Visit autismsocietyphilippines.blogspot.com for schedule of NDPR Week events.
ASP July 31 seminar features Teacher Landa Bautista on “Vocational Training for Persons with Autism” and “ABC’s of Job Coaching”. Francis Kong and Malu Tiongson-Ortiz speak on “Parenting” for ASP Diliman Chapter. For those interested to attend these seminars, please call ASP Office at 7-903-5496
Source: Manila Bulletin
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