Disability or Difference? It’s Personal. You decide.
A few weeks ago on our Facebook page we posed two questions:
1. “When you define dyslexia do you use the term "disability" or "difference”?
2. “Or, do you use both terms depending on the situation?”
We received some very personal responses. Many chose the term difference over disability, as these individuals would prefer to drop the disabled label, which points to what one cannot do. These respondents would much prefer to accentuate the inherent strengths associated with dyslexia and would like to avoid the stigma that often occurs as a result of this label.
The term “disabled” is a label that many feel is exclusive to the school experience. The thinking is that the school experience is what actually disables the student because the school’s personnel may not be effectively trained to teach to the child in the way that he learns.
Some parents don’t want to identify their children at all as learning disabled, for fear that this term might affect their children’s later academic careers in college or in the workforce. They’d prefer to not have any such notation in school records. For many parents, it wasn’t until their happy, smart, otherwise capable child first entered school, that the word disability ever entered their minds and vocabularies. Does this resonate with you? I know that I can relate to this in my own experience with my son.
Many people are okay using both terms: disabled and different. I am one of those who uses both.. I realize that it is necessary to work with the school district in the state that I live in and to speak the language and use the terminology that will ultimately provide my son with the supports and services which he’ll need within the school setting. I use the word disability with the school, specifically, SLD (Specific Learning Disability). SLD is what the school evaluation found, this is the wording listed on my child’s documentation, his IEP (Individual Educational Plan). The IEP, with Specific Learning Disability designation, was the document that I used to request and receive multisensory, structured, systematic Orton-Gillingham training for my son. Under Section 504 of The Rehabilitation Act of 1973 and IDEA (Individuals with Disabilities Education Act), school districts are required to provide a “Free Appropriate Public Education” (FAPE) to each qualified person with a “disability” who is in the school district’s jurisdiction, regardless of the nature or severity of the person’s disability. (See the following US department of Education Websites for more information HERE and HERE .
Many parents need to choose the terminology that they use wisely in order to effectively advocate and receive FAPE for their children with Dyslexia. Those children who struggle with reading, writing, and spelling will only gain access to protections under Section 504 and IDEA in public schools if they have been evaluated and found to have an SLD. The term “difference” does not provide for these same protections under Sect. 504/IDEA. My son uses the term dyslexia and disability with his teachers to emphasize the need to use his assistive technology so he may continue to work at the same pace as his peers in class. He knows it is easy for a teacher, however well intentioned, to forget to keep track of what each particular Special Ed student needs at any given time in the classroom, and that because dyslexia is not often as readily visible as are other disabilities, a child can get lost in the shuffle if he doesn’t speak up and advocate for himself. He identifies himself as dyslexic with his classmates when they ask him why he uses a school-issued iPad to complete his assignments. He states “I need the iPad because of my dyslexia, as I have some trouble with writing and spelling.” While describing our dyslexia as a difference is a more optimistic way of describing our patterns of strengths and weaknesses related to our dyslexia,the term disability is the one that typically gets results in the form of services, supports and technologies, when used within the educational setting, however.
See Headstrong Nation get the facts #8 Dyslexia is a disability in some contexts HERE.
When it comes to self-identification, it is important for many individuals to define who they are based on their individual journeys and their struggles. They have fought long and hard in school systems without the proper supports and services they needed. They may have always thought they were deficient and stupid as they were never formally identified. In this case, learning that they have a disability answers many questions about what they’ve experienced in the past, and this information helps them to deal with their shame and to begin healing. For these individuals, using the term disability is an important part of their personal identification moving forward. It’s freeing.
As we learn more about the dyslexic brain and how it functions, we realize that there are inherent differences in brain function. The dyslexic brain responds differently to various reading and language based tasks, with differences even between male and female brains. Here’s an interesting article on the use of FMRI research on dyslexia in males and females from Dr. Guinevere Eden, of Georgetown University. There has been much discussion on the strengths of dyslexics, including strong spatial skills, etc... Brock and Fernette Eide of Dyslexic Advantage discuss the results of their dyslexic strength survey HERE, in an attempt to redefine dyslexia based on strengths. The Decoding Dyslexia (DD) movement has done a tremendous job in raising awareness about dyslexia and has pushed for the early identification and remediation of dyslexia for children by calling for effective teacher training programs on the early signs of dyslexia with appropriate intervention strategies. These moms appreciate and embrace their children’s differences, yet understand the need to use the word disability as they advocate for their children in the public schools and correspond with legislators in the US House and Senate. DD moms know that “different is good,” but in order for others to appreciate those differences, they must use the word disability to get what their kids need. We currently need to use the terminology SLD and the laws, IDEA/Section 504/ADA, that are currently in place, which provide protections, however imperfect they are. We have to be careful not to throw out the baby with the bathwater! .
Many of us hope for a day in the future when our education system will change. We await the time when all kids will be taught the way they need to learn, based on their individual patterns of weaknesses and strengths, and will be truly valued and embraced because of their differences. We hope that children will be able to demonstrate their knowledge in the classroom in ways that work for them, so that their true abilities will be appreciated and they will shine! Whether we identify ourselves or our loved ones using the word disability or difference, it’s good to know that we are all part of a powerful community of dyslexic individuals. In the end, our verbiage is a personal choice.
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Headstrong Nation (Initiative for Learning Identities) is a non-profit dedicated to serving the adult dyslexic community, and we support the parent of the child with dyslexia. Headstrong Nation is committed to helping empower each individual, and we are interested in highlighting the strengths that can come with the dyslexic profile in addition to the weaknesses and challenges that we may experience on a daily basis. We value you, and want to hear your voice, as your voice will help to shape this community.
If you are interested in supporting our efforts and would like to donate to Headstrong Nation we would greatly appreciate this! You may donate via our RAZOO page below and while you're there you can view the film Headstrong Nation: Inside the HIdden World of Dyslexia and ADHD. Just click on the photo of the brain to start the film.
http://www.razoo.com/story/Headstrong-Nation
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