Why Disability Awareness?

All matters of inclusion need to start with disability awareness. This includes all participants of any initiative moving forward. If you're reading this, it includes you. You've come this far which means you are invested in the advancement of someone with a disability. The importance in this is so all are understanding of how we get to an inclusive society. Your role may that of parent, teacher, service provider, clinician, clergy, or business. Whatever it is, you are in this manual for a reason, and all of your roles are not only important, but imperative to making sure this happens. It is a mission we have embarked on, and you are on board. It is not a question of will we be able to pull this off, it is only a matter time, but we need to know how. Talk of inclusion has increased dramatically over the past few years, which is necessary. What we need to do is apply and implement. It calls for us to step out of our personal reason for being here and step into our communities and let them know we mean business. It calls for partnerships and collaboration. It calls for a deeper understanding of our brothers and sisters in all walks of life. Best of all, you are already doing some of this.

This manual will provide you with the avenues to embrace inclusion

The Components

Person first language

It can not be downplayed the significance of communicating, in any circle, using Person First language. This has been well documented but, surprisingly, seldom used by many individuals close to the individuals with disabilities (IWDs). I have found parents, educators, service providers, clinicians, and medical professionals lacking in proper language. It is imperative to understand that when we reference any individual with demeaning language, we immediately cast them in a lesser light. Two of the most abused words are 'retard' and handicap. We will break these down separately. The R word is frequently used by the lay community in reference to any person who does something foolishly or in error. It has company in words like idiot, imbecile, and moron, which all once upon a time were acceptable terms in describing individuals diagnosed with Mental Retardation (MR). Since the diagnosis of MR is still in the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) we have 'conveniently' condensed it to become this derogatory term. Now imagine being an individual diagnosed with MR (of which I know many people, some I consider friends and peers) and you were to hear the term used in a negative sense. How would you feel?!?! Now let's take a look at you. You are a male or female, have ethnic roots, most likely a religious conviction, a person of color, a professional of some sort. Think of all the negative terms that have been used to describe you. Is that OK? Not at all. Political correctness includes derogatory terms intended for IWDs. For centuries, words and terms have been used to identify people, for a variety of reasons and purposes. In our society, we tend to lock into specific language that may become descriptive, often times beyond the true character or make up of an individual.

Terms that reference someone's race, ethnicity, or religion, or the way a person carries themselves, are almost common in everyday discussion, however not without harm or misconception. We have seen certain language evolve, usually because it is politically correct, to what we now understand today as the 'right way' to reference someone.

However, one group of individuals seems to still hear a wide range of archaic verbiage from the vast majority of Americans.

Individuals with disabilities have long been verbally abused by the general public, usually with the abusers being ignorant to it.

Many common day words, such as idiot, moron, and imbecile, have their roots in what was once 'acceptable' descriptors for certain individuals. Using disability-words-turned-insults and metaphors (turned a deaf ear, blind as a bat) are unacceptable. To the dismay and disgust of many, a word that seems to be still common but is as denigrating and inappropriate as any ethnic or racial slur is 'retard'. Knowing and having friends who have the antiquated 'label' of mental retardation hurts me even more. The United States is the only progressive country in the world to still use the term mental retardation (internationally accepted is intellectual disabilities).

However, inappropriate language does not stop there. Terms like cripple, lame, deaf and dumb, to name a few have long been shelved. But how about some as common as handicap. Yes, handicap is dead. The term comes from beggars who had their 'cap in hand'. The connotation is that individuals with disabilities could do nothing more than beg.

Governor Spitzer passed a state law this past summer that eliminates this word from any state correspondence or official documentation (laws, regulations , ordinances). The Person First law also calls for the end to improperly describing an individual by putting the person FIRST. For instance, it is not 'the disabled'; it is individual with a disability. Individuals use wheelchairs; they are not bound to them. A person has autism, they are not autistic. When we identify someone noting their disability first, the reference is negative, and so is the attitude.

There is also a tendency to loosely use terms that have a link to mental health. Just as damaging are terms like 'schizo' or 'psycho'. Anti-stigma campaigns begin with the elimination of the abuse of such words.

Even the term disable is negative. It means 'not able'. That imbeds a thought that someone can't do. Can't do what? Work, be a neighbor, live independently? Is that why the employment rate and home ownership for people with disabilities is so abysmal? What we'd like to hear is differing abilities, don't we ALL have different talents and skills that we can bring to our community.

There are 60 million Americans with disabilities, the largest minority in the country, and arguably, the most discriminated against. If we start by simply eliminating certain words from our vocabulary and respecting proper language in everyday discussions it will be the beginning to fair and proper acceptance of individuals with differing abilities.

EXERCISE: Write down any word or term that could be used to describe you.

Service Providers

The business (Yes, it is a business) of service provision continues to find its identity within the world of Inclusion. To best understand this, one must understand the business of non-profit agencies. There is money involved, although usually not enough, to run programs. Determining how this money should be appropriated can be contentious during budget time. Most administrators in a non-profit never ran or even took a course in business, so there is our first gap. Relying on the finance department means we are asking business or accounting majors to have input into the lives of individuals. Most of these people have never had a course in human services, or rarely if ever come in contact with the individuals being served. We now have our second gap. Agencies are held to the laws, through regulations, that their state has imposed. Much of this comes from Quality Assurance (QA), however, QA does not equate to Quality of Care, which should have a direct link to Quality of Life. We have now identified our third and most significant gap. Service providers need to UNDERSTAND what Quality of Life is about. The problem is Quality of Life is defined per individual. We need to understand the person and what's best for them. This gets complex if agencies are not committed to proactive approaches to Quality of Care. For instance, in serving seniors with developmental disabilities many agencies do very little in adjusting to the aging factors that ultimately call for enhanced care. This would include mental health matters, understanding dementia, assessing cognitive decline, environmental modifications, and so on. What tends to happen is reaction to issues of emotional or physical regression, which means someone has lived for a period of time without proper response from the service provider to address their needs. Isn't that the job of the service provider-to be proactive to ensure prevention of physical or mental health issues. Back to the budget; who is making these decisions and with merit are they determined? Another area that needs to be top priority is addressing challenging behaviors. The service provider is the professional who is expected to have on staff behaviorists that will write plans with the intent to extinguish behaviors. Look at it this way, the individual who is exhibiting challenging behaviors is communicating to us. They are telling us something in their life is 'not right'. It could be a medical concern, the frustration from an inability to communicate, overreaction to stimulus, lack of appropriate life experience, or a short frustration tolerance, amongst other reasons. Who is supposed to identify this? How much effort is put into the elimination of behaviors? One of the biggest factors in the barriers to inclusion is behaviors. They are not socially acceptable, nor should they be. The public sees this as completely unacceptable public behavior and develops misperceptions about IWDs.    From this comes a fear of interaction which leads to avoidance. One can not underestimate the implications of this in society. Residential development, employment, recreation opportunities----Competition is good-to an extent.

EXERCISE: Think of a behavior you have exhibited recently.

Support groups/Associations

Spirituality

If any place in your community should be open to the acceptance of all individuals, it would be places of worship.

Education

The most regulated, funded, staffed component of all is the education system. It can also be the most frustrating, perplexing, and resistant of all areas relative to inclusion. For the purposes of this manual  education and the Individuals with Education Act (IDEA) and Section 504 will not be gone over. We will address the regulation most associated with inclusion-transition. One must understand the role education plays in the life of the student, which is educating for life. School ends in our lives, but it serves a life long purpose-to prepare us for adult life. The student with a disability relies on the school district to identify their needs, provide the programming that will allow her to excel in the least restrictive environment and hopefully carry these acquired skills into post-education life. It amazes me the disconnect that many districts have with the adult world.

Employment

The ultimate objective is employment. The biggest barrier is employment. Corporate America and their lack of effort and intent to hire IWDs is glaring and, quite frankly, discriminatory.

EXERCISE: Think of businesses that you know well. It could be where you work, where your spouse works, a business (i.e. store, restaurant) you frequent, or any place that has employees and write down how many IWDs are employed there. Now write down how many businesses you feel should hire IWDs and how you will approach them to ask them consider hiring one IWD.

Advocacy

Do you advocate? Before you answer that, it must be explained, which will have a direct connection to the reason your reading this. Parents are advocates but may not know how to do it. Service providers can not be advocates but do 'advocate for' the individuals they serve. Self-advocates are true advocates, addressing their personal wants and desires and speaking for themselves, but can show resistance, sometimes to a fault, when others advocate with or in conjunction with them.

EXERCISE: Write down the last time you contacted a legislator on a topic of importance to you. If you have not shame on you BUT it's never too late.

Now write down a topic or issue you feel strong about. What will be your next step?