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Don't IEP Alone | IEP Advice for Parents | Special Education Advocacy

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21 Celebrities who are Smashing Disability and Mental Illness Stereotypes.

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Celebrities with Disability and Mental Illness

It matters. The more we see people with disabilities and mental illness, the more normal it becomes. It can also help children who are struggling envision a future for themselves.

Here are celebrities who are helping us smash stigmas for disabilities and mental illness.

Bebe Rexha: The singer and songwriter recently sent out a series of tweets stating that she is bipolar.  She also explained how she didn’t understand why she felt so terrible sometimes, but now can attribute it to being bipolar.

bebe rexha
attends the 61st Annual GRAMMY Awards at Staples Center on February 10, 2019 in Los Angeles, California.

Wil Wheaton: Honestly, I never watched him until he was on the Big Bang Theory.  But, I love a guy who can poke fun at himself, which he does on the show. He also frequently talks about his chronic depression and anxiety.

wil wheaton

Henry Winkler: When I was about 6 years old, my mom got me a “Fonz” t-shirt at our A&P. I remember it was white and had him sitting on a motorcycle saying his classic, “Ayyyyyy.” Yes, I am dating myself. But for many parents younger than me, they may not really know about the Fonz or Henry Winkler. His video about living with dyslexia is a must-see for all kids with the same struggles.

He has also been a very successful author. See the books below.

Other celebrities with dyslexia include: Orlando Bloom, Keira Knightly, Whoopi Goldberg, Steven Spielberg, Jamie Oliver, Keanu Reeves, Jay Leno, Vince Vaughn and Anderson Cooper.

Ryan Reynolds: Yes sir, Deadpool has lived with anxiety his whole life. I found his discussion about life in his 20s very relatable.

ryan reynolds anxiety

Will.I.Am: I love the Black Eyed Peas, and I just love love love the song that he did with Sesame Street a few years ago. Did you know that he is considered to be legally blind? Yep, he is. He is seriously near-sighted and has a condition called nystagmus. He has stated in interviews with magazines that his vision issues made it very difficult for him in school and that is why he turned to music.

will.i.am and sesame street

Justin Timberlake: Justin Timberlake has stated publicly that he has ADD and OCD and that school was very tough for him. Surely he knows how kids that are experiencing the same feel in school.

Ashley Judd: Ms. Judd is more than an actress and a pretty face. She’s intelligent, has been very outspoken on issues such as women’s issues and global health. She has been outspoken about mental health issues. 1 in 5 Americans will experience a mental illness of some kind, and the Judd family has had their fair share.

Michael Phelps: Michael Phelps was diagnosed with ADHD in elementary school and his mom has been very open about their struggles and their coping strategies. He’s also an outspoken advocate for athletes and their mental health.

Carson Daly: I’m aging myself again, but I remember watching Carson on MTV back in my college days. Who knew he was struggling with GAD just like I was?

Tammy Duckworth: I saw her once in a Congressional building in DC, and I got all silly and fan-girl over her! But I am a huge fan. She is just crushing stereotypes all over the place-mom, senator, veteran.

Kevin Love: Got an anxious little athlete in  your house? We do! So I was thrilled to share this piece from the Cavaliers’ Kevin Love about panic attacks and anxiety. If that’s not enough, check out this article about deaf baseball players.

Daniel Radcliffe: What?!? Harry Potter? Yes, indeed. Our favorite wizard has dyspraxia.

I know that there are many more who I have not included. Maybe someday I’ll make a master list, but that would take too long. It’s estimated that 10-20% of our population lives with a condition of some kind, so I could be listing millions!


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It’s all about FAPE.

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FAPE

This is a disturbing trend. I have recently had conversations with several different parents who are unfamiliar with the term FAPE. I even had one claim that “FAPE isn’t a term that we use in my state.” First, yes it is. Second, every parent needs to understand what FAPE is. It is the cornerstone of Special Education. Understanding and embracing the concept of FAPE is what makes good advocates great advocates.

fape

What is FAPE?

The short answer is that FAPE is Free and Appropriate Education. FAPE is everything.

From Wikipedia:

Free Appropriate Public Education (FAPE) is an educational right of all children in the United States that is guaranteed by the Rehabilitation Act of 1973[1] and the Individuals with Disabilities Education Act (IDEA). Under Section 504, FAPE is defined as, “…the provision of regular or special education and related aids and services that are designed to meet individual needs of handicapped persons as adequately as the needs of non-handicapped persons are met and are based on adherence to procedures that satisfy the requirements of” the section. Under the IDEA, FAPE is defined as an educational program that is individualized to a specific child, that meets that child’s unique needs, provides access to the general curriculum, meets the grade-level standards established by the state, and from which the child receives educational benefit.[2] The United States Department of Education issues regulations that define[3] and govern[4] the provision of FAPE.

To provide FAPE to a child with a disability, schools must provide students with an education, including specialized instruction and related services, that prepares the child for further education, employment, and independent living.[5]

Your child is entitled for FAPE. It is the main principle of IDEA. Remember, until 1975, it was common practice to exclude children with disabilities from the public schools.

Supreme Court: Why the Justices matter.

What do you think about Justice Scalia’s passing and the decision to nominate or block a Supreme Court nominee? (this was written shortly after his passing but updated recently) Did you know that there dozens, if not hundreds, of Supreme Court cases that changed Special Education?

There’s a lot of talk right now about the Supreme Court. Should he appoint, should he wait? And maybe, with all the “noise” out there, you’re ignoring it. Maybe you think it doesn’t apply to you. But, the Supreme Court has handed down some very important decisions regarding Special Education.  I don’t know what the actual breakdown is–how many cases that are heard by the SCOTUS are special ed cases, as a percentage. But, it’s enough that we do need to be concerned about who is deciding. This is exactly why all Special Needs parents need to be involved in advocacy.

IDEA sets the framework for what schools should be doing. And state regs may further define it for us or give more details. But much of the nitty-gritty is still determined by case law. And this is only SCOTUS case law that I am presenting, just because we have a SCOTUS vacancy right now.  There is still much fascinating information in the federal district courts. Many parties choose to stop after a federal decision. Or, the SCOTUS can refuse to hear the case, thus cementing the Federal court decision.

I originally wrote this post right around the time of Scalia’s passing. Since then, we have had the Endrew Case. Endrew was important not only because it helped define FAPE, but because it was an early and unanimous decision. Here are some talking points about Endrew and 7 other Supreme Court Cases that shaped special education.

Supreme Court cases that shaped Special Education

1954-Brown v. Board of Education: Provided an equal opportunity for all.
“Where a State has undertaken to provide an opportunity for an education in its public schools, such an opportunity is a right which must be made available to all on equal terms.”
Although this case was originally about race, in subsequent cases, it has been used and pointed to as a reason to include kids with disabilities.

1982- Rowley v. Board of Education
FAPE! SCOTUS decision was that the IDEA requires proposed special education and related services to be “reasonably calculated to enable (student) to receive educational benefits.” The phrase “reasonably calculated” has generally been understood to mean that the IDEA does not guarantee any particular result—rather, the educational services proposed by a school district must only be reasonably likely to provide sufficient benefit to the student. The key remaining question, of course, is how much benefit is sufficient under the IDEA’s FAPE mandate. The Rowley case gave a little bit more definition of “appropriate” and related services, held the school district accountable for procedural violations that caused harm to the student, and it determined that grades are not to be the sole criteria in determining success.

1984-Tatro v. Irving Independent School District
SCOTUS determined that a child could stay in school despite his disabilities that necessitated that he have a catheter cleaning each day at school. Since a trained layperson can perform that procedure, it was determined to be a related service. The case stands out as the court’s first attempt to define the distinction between “school health services” and “medical services.” This was later similarly addressed in 1999 in Garrett F v. Cedar Rapids Community School District. The Court held that continuous nursing service is a “related service” that the school district is required to provide under the IDEA. The Court also noted that an IDEA dispute “is about whether meaningful access to the public schools will be assured”, thereby repeating the “meaningful access” standard originally articulated in Rowley.

1988-Honig v. Doe
SCOTUS ruled that a California school board had violated the Education for All Handicapped Children Act (later became the Individuals with Disabilities Education Act) when it indefinitely suspended a student for violent and disruptive behavior that was related to his disability. In addition, the court affirmed that the state must provide services directly to students with disabilities when local school boards fail to do so, and it further clarified “stay put.” Stay Put or Pendency, is the concept that a child stays put in their current placement while IEP disputes are resolved.

If you click that link, I further explain pendency. It can work for or against the child, depending on how satisfied the parent is with the current placement.

2005-Schaffer v. Weast
Ah, one of my favorites! (I’m being sarcastic.)
Supreme Court held that the burden of proof in a due process hearing that challenges an IEP is placed upon the party seeking relief. So, if a parent files for Due Process, then Burden of Proof is on the parent.

Some states have passed Burden of Proof legislation to put the burden on the LEA. Pennsylvania introduced legislation but it never went any place.

2006-Murphy v. Arlington School District
Supreme Court determined that parents who win in a Due Process hearing are NOT entitled to recover expert witness fees having to do with the claims established in Due Process.

Endrew and FAPE Supreme Court case

Here is the recent OSEP guidelines on Endrew.

Download to Print [472.88 KB]

And here is what Pete Wright has to say about it.

So, there you go. Several really important cases. And that’s only 8. I could go on forever. I haven’t even touched on private placement and reimbursement…and there have been several cases determining various outcomes regarding private placement at public expense. There have been other cases on stay put, pendency, related services and discipline.

Special Education History

How Geraldo Rivera affected your IEP and IDEA 1975.

How Geraldo Rivera affected your IEP and IDEA 1975.

PARC, Pennhurst and the most under utilized disabilities resource in Pennsylvania

PARC, Pennhurst and the most under utilized disabilities resource in Pennsylvania

What is an IEP? A Guide to Getting Started, for Parents.

What is an IEP? A Guide to Getting Started, for Parents.

What Parents Should Know about FAPE, IEPs and the Supreme Court.

What Parents Should Know about FAPE, IEPs and the Supreme Court.

So for those of you who say “I thought this was an education blog, not political!” I say, “It is both. Because the two are never separated, unfortunately.” And never have been.

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The 7 things you need to become a Special Education Advocate.

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How to become a Special Education Advocate

I never intended to become a Special Education Advocate. I merely took a course because my son was a toddler and I thought that the information would be good to have. Then, the 2008 recession hit, and I found myself unemployed. For me, it definitely was one of those “God closed a door but opened a window” moments. Because PA is a great state for unemployment, once I took out my very long commute and daycare for 2 babies, I was making more on unemployment than when I was working. That time allowed me to volunteer and go to trainings and develop my skills.

Ok, you’ve dealt with numerous issues with your own child. You’ve learned quite a bit about the IEP process. Now you’re thinking that maybe you’d like to help other parents. Sound familiar?

I answer a lot of IEP questions. But I also answer many inquiries a week asking how to become an IEP Advocate. I actually have information in another post about Special Education Advocates, but I think that this warrants its own post.

become a special education advocate

And just for fun, I’m going to list these items from easiest to hardest. At least in my opinion.

 

What you need to be an IEP Special Education Advocate

  1. Training. This one is by far the easiest. You will often hear that many Advocates are “self-taught” but that doesn’t mean that we don’t go to training. The good ones go to lots of training. Every state has a Parent Training Center. You can check with yours to see what is available. Plus, all the big non-profits who support disabilities offer webinars, conferences, workshops, you name it. Check to see if parent scholarships are available. You can also try COPAA or Wrightslaw, both of whom offer extensive training. You do not need to be certified or licensed to be a Special Education Advocate. In fact, as of 2019, there is no national certifying body that is nationally recognized. I often use the Lifeguard analogy. If you want to become a certified lifeguard, you can get your certification through the Red Cross, YMCA, Boy Scouts, Ellis and more. And, depending on who you talk to, they’ll say that theirs is the “best.” That’s up for debate, of course. So you just have to go with what meets your needs and is at least credible and recognized. The various programs out there claiming to be certifications are kind of battling their way to the top, to be considered the best. But this is an area where you’re just going to have to get on email lists and follow Facebook pages and network with other parents to hear about what is available.
  2. Experience. Great, you’ve got some knowledge! But most of my knowledge came from hands-on experience. Again, you can network with others to see if there are agencies near you that need volunteers. Or, you can become an Educational Surrogate. Start with assisting friends and family. Then volunteer, and build from there. When are you ready to accept money for your services? That’s up to you.
  3. A business model. After you become a Special Education Advocate, then what? Do you want to be in business for yourself? Or hope that an agency will hire you? What will you charge clients? How will you bill them? If you plan on being in business for yourself, you need a business plan. And the time and knowledge to start a business.
  4. Writing Skills. If you’ve spent any time with an advocate, you’ve likely heard them say that “it’s all about the paper trail.” Which is true! But many of my clients lack effective communication skills, so I have to help them prepare their correspondence. That takes skill and practice. And it is time-consuming. If you do not like writing, I would say that this may not be the job for you.
  5. Internet Skills. Every child is different. “I” in IEP, right? For a long time, it felt like I was never encountering the same situation twice. A good training program (see Number 1 above) doesn’t give you all the information you need. That would be impossible. Good programs teach you about what is available and where to find that information when you need it. And it takes a certain amount of skill to know what you are looking for, and the right searches to do. Some of the information that Special Education Advocates use can be pretty obscure and hard to find. It also can be tiring to always be on the learning curve.
  6. People Skills. I’m an introvert by nature, so a lot of this is difficult for me. I love writing and researching, but I hate meeting people all the time. Well, maybe hate isn’t the right word. It just exhausts me because I have to work hard at it. But I have to negotiate with hundreds of different IEP teams. Parents who are not on the same page, or who maybe aren’t “getting it” as far as what is available to them. The people part can be hard.
  7. Patience and the ability to not get jaded. There are a lot of egos in this field. People do not like to be told that what they are doing is incorrect. It takes patience. You have to be able to strategize and develop a long term strategy for your client. Once you become a Special Education Advocate, people only call you when there’s a problem. They don’t call you to tell you that their child just attained an amazing goal. So we only get to hear the worst. I am constantly singing Luke Bryan’s “Most people are good” because, in this field, we don’t always see a lot of good.

If I wanted to, I could probably continue this list for days. I think it’s a great idea to have a mentor, but not all areas have special education advocates. I think that you need a support network, but again, maybe not available in all areas. You need a good, reputable law firm who you can call on when you need advice or send a client to that next level. It happens!

Good luck to you, and you should also read What Parents Should Know about Special Education Advocates.

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5 Reasons to Become an IEP Educational Surrogate.

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Become an IEP Educational Surrogate

Have you heard of being an IEP educational surrogate parent? Many times parents ask me how they can give back to the special needs community. Particularly for those who have their own child’s situation settled and stable, and have the knowledge, but maybe not quite enough knowledge to be working professionally as an advocate.

educational surrogate

There are many options including Parent Partner or Parent Buddy programs, but there is also a little-known thing called Educational Surrogacy Parents or ESPs. (yes! another special ed acronym) And it’s actually a provision of IDEA!

5 Reasons to Become an IEP Educational Surrogate

  • A disabled child needs you.
  • You can make a real difference in a child’s life.
  • It’s not hard to do.
  • Surrogate Parents are needed.
  • It takes a certain knowledge base and you already have some of that knowledge.

Here is also a list of OSEP Dear Colleague letters about educational surrogates, but hey, cannot guarantee that they will be there forever either.

What is an Educational Surrogate Parent?

Educational Surrogacy is actually a program outlined in IDEA 2004. To paraphrase some of the statute and regulations:

(a) General. Each public agency must ensure that the rights of a child are protected when–

(1) No parent (as defined in Sec. 300.30) can be identified;

(2) The public agency, after reasonable efforts, cannot locate a parent;

(3) The child is a ward of the State under the laws of that State; or

(4) The child is an unaccompanied homeless youth as defined in section 725(6) of the McKinney-Vento Homeless Assistance Act (42 U.S.C. 11434a(6)).

(b) Duties of the public agency. The duties of a public agency under paragraph (a) of this section include the assignment of an individual to act as a surrogate for the parents. This must include a method–

(1) For determining whether a child needs a surrogate parent; and

(2) For assigning a surrogate parent to the child.

(c) Wards of the State. In the case of a child who is a ward of the State, the surrogate parent alternatively may be appointed by the judge overseeing the child’s case, provided that the surrogate meets the requirements in paragraphs (d)(2)(i) and (e) of this section.

IDEA criteria for the selection of surrogate parents

(1) The public agency may select a surrogate parent in any way permitted under State law.

(2) Public agencies must ensure that a person selected as a surrogate parent–

(i) Is not an employee of the SEA, the LEA, or any other agency that is involved in the education or care of the child;

(ii) Has no personal or professional interest that conflicts with the interest of the child the surrogate parent represents; and

(iii) Has knowledge and skills that ensure adequate representation of the child.

(e) Non-employee requirement; compensation. A person otherwise qualified to be a surrogate parent under paragraph (d) of this section is not an employee of the agency solely because he or she is paid by the agency to serve as a surrogate parent.

(f) Unaccompanied homeless youth. In the case of a child who is an unaccompanied homeless youth, appropriate staff of emergency shelters, transitional shelters, independent living programs, and street outreach programs may be appointed as temporary surrogate parents without regard to paragraph (d)(2)(i) of this section, until a surrogate parent can be appointed that meets all of the requirements of paragraph (d) of this section.

IEP Educational Surrogate parent responsibilities

The surrogate parent may represent the child in all matters relating to–

(1) The identification, evaluation, and educational placement of the child; and

(2) The provision of FAPE to the child, including LRE.

(h) SEA responsibility. The SEA must make reasonable efforts to ensure the assignment of a surrogate parent, not more than 30 days after a public agency determines that the child needs a surrogate parent.

Who can be an Educational Surrogate?

Previously, I worked for a disability agency that provided services to individuals with disabilities, so I was unable to be an IEP surrogate. It was considered a conflict of interest. The same goes for teachers, sorry. The conflict of interest arises when, for example, you are an SLP–and let’s say your surrogate child would really benefit from a specific program offered by your agency. You cannot in good conscience, without a conflict of interest, recommend the agency that you work for. Make sense?

However, if there is a dire need in your area, call the agency in the county or state next to you and see if you can do it there. I live in PA, just a few miles from the DE line. I suppose that while I was working for that agency, I could have done Educational Surrogacy in Delaware. I just didn’t because Delaware regs are out of my comfort zone.

So, if you wish to become an ESP, you have to be familiar and comfortable and knowledgeable about the IEP process. You should be a good advocate and able to speak up, problem solve, collaborate. All the skills that a good advocate has. You have to have the time. Think of how much time you devote to your own child’s IEP process, and now double it. You have all the rights and responsibilities of a parent, as pertains to the IEP process. Emotionally, this is very hard at times. These are the “worst case scenarios” as these kids don’t have anyone on their side. These are America’s neglected children, often bounced around to multiple placements, quite often in the Juvenile Justice system, quite often abused and so on. It is not for the faint-hearted.

Is Educational Surrogacy only for Special Needs parents?

You do not have to be a parent of a child with an IEP, but usually, they are. I mean, who would learn and go through the IEP process if you didn’t have to, right? And different geographic areas have different levels of need. Since I am in suburban Philadelphia and live in a county that has several RTFs and homeless shelters for youth, the need is greater around here. But, there is a need everywhere, so if you are interested, ask. You can always be put on a list to be called.

It is also very rewarding and you have the opportunity to give a voice to a child who previously very likely went unheard. You can make a difference in one child’s life. These are the kids who most need a strong person on their team, and you can be that person.

How to become an Educational Surrogate Parent

Call your state’s Department of Special Education and ask about it. As I said, it’s part of IDEA, so they should have one and know about it. Most have an application process and a training/set up program of some kind.

*Please note, if your state is not hyperlinked, it is because I could not find one. If you have a good source, email me or leave a comment and I will add it. Thanks.

Some states brought back some really crazy responses, I’m looking at you Kansas and Kentucky. If your state is not here, try asking at your state’s Disability Protection and Advocacy Group.

Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Maryland
Massachusetts
Michigan
Minnesota

Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania-Call your Intermediate Unit/IU, see map
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
West Virginia
Wisconsin
Wyoming

Download to Print [526.64 KB]

Blog Owner’s Note: I’m trying really hard to not blame Betsy DeVos and the new administration, but all my previous links to the IDEA website are no longer valid. Until there is more security and stability at the US DoE, I will not be linking to them. I did this as a courtesy, to take you to the direct link in IDEA that you may need. However, it’s equally as frustrating to hit a dead link. Therefore, I am including the Education Law Center’s explanation of this IDEA provision. I hate to tell you to do this, but please do an internet search if you need more information.

 

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8 Reasons why I’m no longer using the term “Special Needs.”

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Why we need to stop saying “Special Needs.”

Several months ago, I did a blog post about People First Language, and why it shouldn’t be mandated. Certainly not by non-disabled people. At the end of that post, I said this: Up next: I’ll be tackling “special needs.” Because that vernacular is seeing a shift too. Stay tuned. 

So here we go. Why we, as parents need to stop using the term special needs. First I want to quote another parent like me, who did a similar post almost a year ago. In that post, she said, “I also want to say that I’m just one person, going through my process. Everyone is somewhere different in their journey, their life. This is where I’ve come to, but if you look back through my blog, you’ll see a few years ago I was a very different person. VERY DIFFERENT.” 

disabled instead of special needs

Hear, hear! I couldn’t agree with her more. We are all at different points on our journey and learning and language and vernacular is constantly changing. I am sure that if you combed thru every single blog post, you’ll find phrases that are ableist. As I am trying to grow and learn about ableism, I have tried to go back and update the particularly cringe-worthy ones. But after 8 years of blogging, it will take me forever to find every instance where it says “special needs” and replace it. I also know that there are people who disagree with me, and that’s ok too.

I will always continue to call people what they prefer to be called. For now, because I am not disabled, I am going to follow their lead, as we all should do.

Jamie Davis Smith also echoes my sentiments, which apply to this issue and the People First Language issue. And that is, “But my daughter cannot speak, so I have no way of knowing her preferences. Instead, I’m taking cues from advocates who are disabled themselves. And what I have learned is that it is not just okay but preferable in many cases to call a disability a disability and not trying to cover it up with softer language.” You can read more of her thoughts in “My Daughter doesn’t have Special Needs. She’s disabled.”

8 Reasons to Say Disability instead of Special Needs

  1. Disabled is not a dirty word. Why are we avoiding using the word disabled? Calling my son anything else does not make him any less disabled. To take another quote from the blog post I mentioned earlier: Disability. It’s a word used with pride. A word reclaimed. Part of an identity. A community. In itself, it’s not a negative or a positive necessarily in terms of describing the person or experience, but something which combines with everything else to make you, YOU. It’s part of you and that part is important. I suggest you read the entire essay “We can’t keep using “special needs” – we need to listen to disability advocates now.”
  2. Disability is a normal part of human diversity. Somewhere around 15-20% of the human population is disabled. Like other forms of diversity, the presence of disability in the world enriches humanity in ways that we probably can’t even imagine. Being disabled is not something to be ashamed of, and it’s not something to be scared of; it’s just a fact of life. Great thoughts from Erin Human.
  3. My son’s needs are not special. He needs to communicate and to eat, go to school, get a job, have friends and leisure activities. Are those needs any different from you or me? No, they’re not. How he will access them is different. But the needs themselves are not “special.” Disabled people need to get access to community transit, theaters, restaurants, swimming pools, shopping malls and everything else that you and I access without even thinking about it. That doesn’t make their needs special and when we set the tone that they are special needs, it minimizes their rights. Disabled people have a right to do everything we do. And yes, by law this is their right. It’s not something special we do for them.
  4. It makes the solutions seem like a favor. We’re not doing disabled people a favor by giving them a ramp. Because my son uses a wheelchair and because quite often we go out in public just the two of us, we often have trouble accessing doors. Shouldn’t he have the right to enter every door that I enter, without a hassle? As Michelle Swan says in her essay My Needs are not Special, “My needs are not special, they are just my needs, and I have the same right to have my needs met as any other person.”
  5. Lawrence Carter-Long, who founded the movement called Disabled, Say the Word, says, “The language we use mirrors the ways we think,” he says. “Embracing the word disabled, fighting the urge and the conditioning that demands we distance ourselves from it, is a powerful illustration of self-determination in action. It epitomizes how far the disability community has come. By deciding what we want to call ourselves, owning it, we claim our power and celebrate the history and the community advocacy that made it possible.”
  6. Disabled people prefer this. Sure, not all of them and not all the time. Nothing is ever 100%. But just like learning about mourning (cringe) and autistic and people first language, this is where I am learning. From actual disabled people. As Meriah Nichols puts it, That doesn’t mean every adult from those communities, just like not every adult with Down syndrome is asking you to quit saying the r-word; but enough of them, the majority of them, identify as having a disability, not a special need. 
  7. Avoiding the word inherently implies negativity. Being disabled is not a tragedy; how society treats disabled people is the tragedy. By coming up with all kinds of phrases and words to avoid saying disabled/disability inherently implies that those words are so negative, they just shouldn’t be said. Say “handi-capable” instead. Are you friggin kidding me? Why do we need to remind society that disabled people are capable of doing things?
  8. It doesn’t work! Here’s one for the numbers geeks out there. If you’re reading this, got this far and are still saying to yourself, “Words, schmords, it sounds nicer so who cares?” Here’s one for you. This doesn’t work. Yes, people have actually studied it and found that “Special needs” is an ineffective euphemism.

It’s evolving. I’m learning. I will still make mistakes. Despite my best efforts and intentions, I still am only a parent and not a disabled person. But my guess is that within the next few years, this term will fade away. As it should.

Take a look:

 


Be ready for your IEP meeting!

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{People First Language} 8 Reasons why we should all rethink our stance.

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People First Language

People first vs. identity first language, PFL vs IFL. When I was first introduced to the concept of people first language, I was all “Yes! He’s a person first!” I reworked blog posts and titles to accommodate the language. I corrected friends and family when they misspoke and gave diatribes about how my child is actually a person! (I was so fun to be around, no?) As Maya Angelou said, “When you know better you do better.”

I have since changed my views on many things. That whole mourning bullshit, for one. The other is people first language and how I introduce my disabled son to people.

people first language

Then, I started reading first-person disability blogs. And while I didn’t reverse any of my blog posts, I now usually use identity first language. In recent years, I have changed my tune. In case you are not familiar with the “debate”, this is what I’m talking about.

What is person-first language?

When speaking or writing, it refers to the person first. Such as:

  • Person with disability
  • Person with autism

What is identity first language?

It’s not exactly the “direct opposite” of people first language, in that it is not putting the person last. It is merely a way of saying “having a disability is acceptable.” You don’t need to try to hide the disability or squash it and put it second. It’s a part of who I am.

  • disabled person
  • autistic person

I would guess that probably once a month, a Facebook follower or blog reader will try to correct me and beg me to use people first language. Some are nice about it, some are not so nice. Recently, on a Facebook post, a reader pleaded with me: Love the blog post, but please, please use people first language.

My response to her was to suggest she also read such blogs and articles about identity first language. What is important is that we listen to people who are actually disabled or autistic. I’ve summarized a few great quotes below, with the links to their full thoughts.

I think they will have you rethinking people-first language if you’re a card-carrying member.

8 quotes that you make you stop demanding “people first” language.

1. From: The Body is not an Apology

I am Disabled: On Identity-First Versus People-First Language But at the same time, there’s no way to see the person without the disability. A person is not a blank canvas that other things are added onto. From the moment we’re born, perhaps even from the moment we’re conceived, our experiences shape us and make us who we are. My disability, among many other things, is integrated into who I am. There is no way to separate me from my disability. It’s not as if “person” is a standard action figure, while “disability” comes in the accessory pack designed to make you spend more money. That’s the image that comes to mind when I hear person with a disability.

disabled ableism

2. From: Autism Myth Busters

Saying “person with autism” suggests that autism is something bad–so bad that is isn’t even consistent with being a person. Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. We talk about left-handed people, not “people with left-handedness,” and about athletic or musical people, not about “people with athleticism” or “people with musicality.” We might call someone a “blue-eyed person” or a “person with blue eyes,” and nobody objects to either descriptor. It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.

3. From: Autistic Hoya

Identity and Hypocrisy, A second argument against People first Language: These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic does not diminish the other aspects of my identity. Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Being Autistic is like being anything else.

4. From: Think Inclusive

Why person first language doesn’t always put the person first. I was born with my disability. It was news to me that calling myself a “disabled person” was an insult. It had always been just a fact of life, a part of who I was. And now, after all these years of calling myself what I am, here was an educator, who doesn’t even have a disability, telling me I had it all wrong.

5. From: Musings of an Aspie

The Logical Fallacy of Person First Language. I fail to see why it’s okay to use the identity first descriptor “typically developing child” but not the identity first “autistic child.” Why do we constantly need to be reminded that the autistic kids are people? Is it so easy to forget? I would hope that no matter what label I use to refer to myself it be would obvious that I’m a person.

Anyone who needs to constantly remind themselves that disabled people are people should probably spend more time examining their own beliefs and less time telling other people how to speak about themselves or their children.

6. From: ASAN

Identity first language. Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which individual experiences and understands the world around him or her. It is all-pervasive.

7.From: Dear Autism Parents

Notice, though, that when a car stops being drivable (disabled) it doesn’t also stop being a car. Similarly, a human who can’t do some expected human things doesn’t stop being a human. In some contexts, a car that can’t drive is a bad car, worthless, lesser, low- or non-functioning. In others, though–art, architecture, scrap metal (remember, humans aren’t cars and these examples don’t have direct equivalents for us, please don’t try and find the scrap-metal humans), a car with an exploded wheel is valued positively. Similarly, in a world without stairs, using a wheelchair can be an advantage. In a world where everyone uses sign language, only speaking with your mouth is a disadvantage. Meaning and value and worth get assigned to people based on how useful their range of capabilities and potentials are for various activities. A person who can’t participate in the activity they are expected to is disabled. This is what disability means.

8. And last but certainly not least, from Bustle

What is identity first language and should you use it? The best thing to do in order to empower the disabled community to define themselves? Ask them how they’d like to be referred to — and advocate with all your might for wider disability-related protections and rights, to make life easier for everybody.

Have they changed your mind?

Up next: Why I’m no longer using the term ‘special needs.’

Also, read:

 

organize iep files

IEP Meeting Advice for Parents

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