What is a stigma? A quick google search reveals the following:
A mark of disgrace associated with a particular circumstance, quality, or person.
Wikipedia goes a little further to say that social stigma is:
The disapproval of, or discrimination against, a person based on perceivable social characteristics that serve to distinguish them from other members of society. Social stigmas are commonly related to culture, gender, race, intelligence, and health.
What is a stigma in disability?
It’s when people discriminate against others based on something that’s different from social norms. This has a lot to do with aesthetics (appearance), disruptiveness, controllability, predictability, fear, and experience.
I thought Special Education is only for kids with severe physical and intellectual disabilities.
Kids with special needs may or may not look different. The so-called hidden disabilities like autism spectrum disorder and sensory processing disorders often produce unpredictable outbursts in kids. ADD and ADHD likewise. Obviously, all kids in special education require special supports and services. In fact, I would argue that at some point in life all of us need special supports at one time or another.
Removing the stigma of special education…
If you have ever outsourced a service, let’s say, a mechanic, a medical expert, an advisor, a minister, a repair person, a driver, etc. you too have required special support. That’s what people do. We support each other in times of need.
Do you feel ashamed for seeking out these supports? If you have a huge network of friends, you may not have had to pay for this. If you have adequate financial resources, you may have paid for some of these. If you are a taxpayer, some of these services may be available through the government. In the U.S.A. we are able to access public education for free through the U.S. Department of Education for both regular and special education services.
Is there a stigma of accessing public education?
Is public education the great equalizer?
Is there a stigma for special education?
Depends on who you’re talking to.
For those of us in the caring professions, we simply don’t see it that way. I started occupational therapy school at the age of 17 with a group of shiny faced teenagers eager to change the world. I started advocating for people of all ages with disabilities long before that. I never viewed people with disabilities with any kind of stigma. Perhaps I am different, or lucky. Perhaps it was the way I was raised; to be accepting of everyone no matter who they are or what they have going on.
Special Education is bad- says who?
As a parent of a child with special needs, you might have to ask yourself some important questions? Do I have a stigma about my own child? Do I feel shame regarding my own child? If I do, what is it exactly that is triggering that shame? Is it really my own feelings, or what other people might think that’s bothering me? Maybe your feelings of shame are ones mixed with unresolved grief or anger or guilt of not having your needs met regarding your special needs child. That can lead to feelings of shame, but these feelings are and should be separate.
There is no shame in any of your feelings. There are times we all have those feelings. There is also no shame in your situation; it simply is what it is. There is no judgment and no blame here. It is important to take the time to really take stock of how to cope with the variety of feelings and the enormous effort that come with having a special needs child. I cannot emphasize enough how important self-care and support are for parents. Or does it have to do with seeking out those supports? Or that you don’t know how to get those supports because you feel like you don’t know about the system and your sense of belonging has been shaken?
Does YOUR school have a stigma or disapproval regarding Special Education? Find out about the culture of what’s going in your school.
Removing the stigma of Special Education – becoming pro-active and feeling empowered!
I have been fortunate to meet some of the most amazing and courageous people in my personal and professional life. Two of the giants in the history of California Special Education law are Rachel Holland’s parents Kim and Robert. They each came separately to our class during my studies at California State University Sacramento to speak about their journey in their fight against Sacramento City School District.
The case went to the 9th Circuit Court of Appeals in 1994 and cost the district $6 million dollars to lose to the Hollands. I remember when Kim said the school district at one point tried to tell her that it would be too expensive to do what the family was proposing and gave them a bunch of figures to look at. Except Kim’s superpower was that she had a degree in Economics which happened to be from Stanford University. She laughed ruefully as she recalled the story because of what the district ended up spending to lose the case at taxpayer expense. But she also cried. Because it was still so painful to relive.
The case lasted for FIVE years while the school dragged their feet and if you’ve ever heard the famous quote by Dr. Martin Luther King “Justice delayed is justice denied” then you know the frustration of waiting. Friends advised them to simply move out of the area, but they couldn’t because they couldn’t sell their house as it was in the middle of renovations and they were in debt. The family transferred Rachel to a local private school during that time where she thrived.
Their case ended up being picked up pro bono by the Defense Fund out of Berkley and the rest is history. Every case that has become law is the story of an ordinary family who wanted a better situation for their child. Their situation picked up steam and justice prevailed. The system really works and is satisfying to see in action.
The truth about Special Education
Does it feel like a disgrace to seek out justice for what your child needs? For me, justice is that set of principles that all rational humans would choose to oversee social behavior if they knew that those same rules could apply to themselves and their children too. Intriguing when you really think about it. Is YOUR school offering up something that is acceptable even if it were for their own child in the exact same situation?
Your job as the parent is to have the courage to work for your child’s present and future and to change the trajectory; to change things to become what they should be. This is what America is founded on. As a nation, we do not fear what is different. We ARE different and that’s what makes us unique. We embrace the unpredictable. It is in our power to continue to challenge the status quo through our rights to bring the current laws to more closely align with our highest ideals. And the ideals of our children.
Parents as advocates for their children have been the ones to shake off those stigmas, to throw off the shame. Parents have created the most challenges and therefore created, and forced the changes that have led to our current version of special education laws.
Parents can also sit on school boards! They can become active lobbyists! Parents can lobby their legislators! Did you know the power of your influence? You can become a support person to other parents. You can become an advocate!
Did you think these stigmas meant you might not belong? Well, you probably didn’t think you’d belong to these groups? In these groups, you’ll find some of the most caring people you’ll ever meet.
Without you, children with special needs would not be seen in our public schools today.
Children who have grown into successful adults who support and provide a caring world for others.
Helen Painter MA, OTR/L is an Occupational Therapist, Consultant, and Advocate located in Riverside County California. Helen helps children with disabilities reach their highest potential in learning and life. She does this by assessing individual needs, developing a plan, and guiding parents to fully access available resources as an independent advocate. Helen has also performed IEEs.