by, Renee Wood

The older I get the more bugged I get that essentially, as far as true freedom to live, people with DD aren’t any better off than before the 1960’s.  Yes, we have the ADA now, which has helped in terms of access and prevent getting kicked out of places solely on the basis of disability, and that was a necessary step in the right direction.  However, all these government programs with their incessant policies and regulations, intended to assist us in living the life we dream of, are serving to stifle our freedom and development. 

We, people with disabilities, will need some assistance throughout our life, a fact I do not deny.  As a non-disabled person, think about the times your car broke down and you needed someone to come help you.  Did you like lectures about how you should take care of your car?  Or the huffy attitude of those feeling put out to help you?  Or triple A spelling out their policies, mostly to protect themselves, rather than having your interest at heart, even though they claim it’s in your best interest?  You probably see right through their bullshit and rolled your eyes, but tolerated it in the moment because you needed help.  Well as a non-disabled person, you only put up with this once in a while.  Most people with DD receiving services from the government, put up with living with these indignities every hour of every day, from the time they enter pre-school until the day they die!  Wonder why people with DD have more behavior issues?  I guarantee only a small percent is directly related to their disability.

When we enter pre-school, we our perceived as “different” by the adults.  Rather than just mingling and playing with the other children, learning to adapt on our own, we are prescribe ways to “fit-in” before it’s even an issue.  Adults teach 3 and 4 your olds that children with disabilities are “different” and need special treatment.  If adults would treat disability as “normal” (Pat does it this way and you do it another way, but you still can play together) then kids would figure inclusion out on their own.  Children are only looking for the answer to “Is this acceptable”?  Once the adults act like it’s not a big deal, then kids will not have an issue with difference – any kind of difference.  Being different from one another will become entirely normal. 

Will there be times of intervention?  Sure, but that is the way it is for any child who is learning and developing.  It’s the attitude in which the intervention is done that indicates to the other children whether the teacher/caregiver is more “put-off” having to deal with this particular child.  In reality, it may not even be that this child is any worse than the others, but the teacher/caregiver is so acutely aware of the disability that it seems more burdensome.  The attitudes conveyed by the adults in that pre-school class about disability, will not only set the trajectory of how that person themselves will view their disability, but will also affect the other children’s view of disability for a lifetime.

IEPs (Individual Education Plans) scream “Treat me special/different”.  Teachers hate them, parents want to get their child’s needs met and have been taught “this is the best way to do that”, but they basically hate the process too, and in the end, it really doesn’t do the student any more good than a good teacher who can adapt to the educational/emotional/physical needs of each student.  IEPs are not worth the paper they’re written on, and in my opinion, in many cases, does the student more emotional harm, than educational good.  This is because many teachers resent students with IEPs, and truth be told, so does the school system itself.  They are forced to do IEPs for students with disabilities, but getting one is a hassle, and even after you do get one, compliance is a nightmare.  Most parents give-up because it is a continuous battle.  IEPs are not working as intended.  Let’s stop the emotional pain on all sides and find a more acceptable way to meet the educational needs of students with disabilities.

Transition, or transition planning is another one of those terms that screams “Treat me different because I have a disability”, rather than, “accommodate my needs as I move from one phase of life to another”.  In typical speak it’s; “thinking about life after graduation”, or simply growing into adulthood.  In DD speak it’s referred to as “transitioning”, as if we’re being morphed into something else.  Drop the vocabulary that is tied to funding (and screams “I’m different”) and use the language of typical people, so people with disabilities are not seen as different, nor feel different. 

We accommodate all non-disabled people in one form or another.  The waiters at the coffee shop know not to ask Jane, a regular customer, if she’d like cream and sugar because you’re going to get an earful about why she doesn’t use cream and sugar.  Or Alice who does an exceptional job at the firm, but you can count on an outrageous story about why she’s 5 to 10 minutes late almost every day.  But that’s just Alice, she’s great at her job and everyone loves her!  In order to naturally accommodate one’s difference, you have to know the individual intimately.  Rarely do we write a plan on how non-disabled individuals are to be accommodated.  Since we know them as an individual – we just do it. 

Whenever possible, it’s best to accommodate a person with a disability in a natural way without writing a “plan” for that accommodation.  It’s important to remember that “written plans” are intimidating to potential employers, community rec/leisure providers, and even the person needing the accommodations because it’s not flexible, and also written plans imply consequences if not followed, even if that is not the intent.  For example, maybe a person using a wheelchair acquired a job in an office and it’s discovered that they can’t get their knees under the desk.  There’s several ways that can be inexpensive and easy to modify the issue.  Initially it’s best to leave this conversation on the best way to rectify this between the employee and employer – this fosters communication and a working relationship between them.  Only if they are both perplexed on the best way to resolve this matter should a third party step in with some new ideas, but it should not be a written “plan” and should ultimately be left to the employer/employee to choose from these ideas, or something else, that will work.

Am I saying, “There should never be a written plan for anyone in the DD system”?  Certainly not!  Level of impairment runs the gamut from imperceptible to all encompassing, therefore the system cannot have the same requirements for everyone in its service system.  When the same requirements are in place across all levels of disability, it arrests the development of the majority, while protecting the welfare of the minority who so desperately need it.  Person Centered “Planning”, or maybe a better word is “Approach”, had good intentions of solving this, the problem became what is really meant by “person centered”?  It was supposed to mean; “a process that helps people with disabilities or older adults choose and organize the services and support they need to live in the community. The goal of PCP is to empower people to plan their lives, find their voice, and work toward reaching their goals. PCP is based on individual aspirations, needs, preferences, and values”. 

What PCP has become is a person in the center of the room, listening to parents, SSAs and providers rattling off a list of services, and trying to figure out how they can fit into what they offer, rather than taking the incessant amount of time necessary sometimes to figure out the actual dreams of the individual (without judgment), and creatively wrapping services around their dreams for the opportunity to actualize them.  With the intensive amount of time and energy going into making sure the requirements for the Individual Service Plan (ISP) is completed, no one has time to spend in true conversation about “dreams”.  If that ISP is not completed, one is not going to get services to get their butt wiped for the next year.  Even though having one’s butt wiped is not a dream, it’s definitely a necessity so real dreams are never addressed.  Goals yes, dreams, not really.

My Individual Service Plan (ISP) is 21 pages long, and my guess is, it’s one of the shorter ones because at 65 years old, with no Waiver, I really don’t give a rat’s ass!  No one sees it (especially those of us with a high level of cognition who are capable of relaying our needs to providers on a daily basis) – it’s just a formality, and all of us with high level of cognitive functioning, laugh at it because it’s required for all, but a useless waste of time creating toilet paper for us!  All I do is insure my ISP says nothing that could inhibit my freedom to do as I will.  Like what person/provider is going to read that 21 page document, when they have a person right there capable of explaining how to assist them with ADLs, what time they go to work, how much time it takes to get us ready for work, what we want to eat, what we like, what we don’t like etc.  We are taking the initiative to foster a relationship with our attendants (providers/staff in the DD legal language), the responsibility to ensure that the needs most important to us are met, and establishing our authority to make sure those needs are met.  A piece of paper can never substitute for personal authority.  That’s what we should instill in people with disabilities from a young age – responsibility for themselves and their services.

The reason everyone is treated the same, regardless of level of disability, is it’s simpler for the system and less liability that mistakes will be made.  To be damned that we (as a system) are further disabling the two-thirds on the other end of the bell-curve of disability, at least one- third for certain is being arrested in their development, for the sake of those who are totally unable.  This is done by centering the DD system’s policies, programs and services on the needs of the third who require the most intense services and protections.  Since this is the case, it’s a far reach to serve the needs, and especially the ideology, of the third who may need services for physical needs, but don’t fit into the protectionism system designed for those on the opposite end of the bell-curve.  The system should have been designed around the two-thirds in the middle, then serving the sixth on either end of the curve wouldn’t have been a far reach from the middle.

If the system keeps providing, and parents/guardians, keep demanding a system that treats all people with DD as incapable (on some level) of the responsibility for controlling our lives and services, then the system will eventually collapse (and I mean soon) under the weight of excessive need.  This notion that all people with DD need to be fully taken care of in every respect, to the degree in which everything needs to be written and documented, fosters dependency, infantilazation and discontent for life.

In conclusion, despite the progress since the 1960s and with the enactment of the ADA, the tangled mess of words, education, and programs that dictate the expectations thrust upon individuals with disabilities still trap us in a suffocating system that smothers our freedom and potential under layers of bureaucratic nonsense. Government programs, meant to assist us, end up becoming shackles, chaining us to regulations and indignities that we’re forced to endure.  The so-called “help” we receive feels more like a thinly veiled attempt to control and confine us, rather than empower us to live on our own terms.

Amidst this chaos, there’s a flicker of hope for change burning within. It’s time to flip the script, to reject the status quo and demand our rightful place in society. We won’t settle for being treated as second-class citizens, for being told what we can or cannot manage.

The current system’s insistence on treating all individuals with disabilities as equally incapable is not only shortsighted but also fundamentally flawed. By centering policies and programs on the needs of the most severely disabled, we’re neglecting the potential and autonomy of the majority in the middle. This approach is not sustainable; it’s a recipe for the collapse of a system overloaded with excessive need.

If we continue down this path, demanding excessive care and control, we’re not only stifling individual growth, but also pushing the system to its breaking point. It’s time to embrace a new paradigm, one that recognizes and respects the agency and capabilities of individuals with disabilities across the spectrum. Only then can we build a system that truly serves and empowers everyone.