Risky Business: A world without institutions.
The risk of what could happen in the community is less than what will happen if they stay in an institution.
“Don’t come back” is a phrase we hear regularly in our work at Sample Supports. Here is generally what happens: We take an individual with an intellectual or developmental disability into a community business/location. We have the best intentions every time: We want to increase their connection and integration in the community. We want them to practice social skills. We want them to have a positive experience with people without disabilities that will build momentum for them to give them courage to have their next positive experience. We want to show the people we serve opportunities that they never had before. Those real world opportunities simply exist outside of the 4 walls of their home.
It doesn’t always work out the way we planned. Sometimes we make a bit of a scene. We make people nervous.
You see, at Sample Supports we work with over 400 individuals with profound and complex needs. As an agency we have also chosen to also work with individuals that are higher risk and have previously been institutionalized and segregated from the general population. This combination of institutionalization and cognitive impairment creates a perfect dynamic of unpredictable behavior that is often like working within an impending hurricane environment: We do what we can to predict it; we track it and prepare for it; but ultimately, we can’t control when the weather will strike. We simply have to endure the storm in the moment and do damage control to the full extent possible. We train our employees to do just that.
“When we are willing to stay even a moment with uncomfortable energy, we gradually learn not to fear it” — Pema Chodron
Our providers are the ones that rush into the fire when everyone else is running away. We see a warning sign and we step in between the person we are helping and the community member…… You’re welcome. We block the hits, get our hair pulled and often leave our work days with bruises, scratches, and even bite marks. The best part? We choose to come back the next day to do it all over again. We have multiple certified instructors on staff that teach our team how to effectively physically manage someone that gets aggressive. Our staff meetings can sometimes look more like wrestling matches than administrative discussions because we practice physical managements with each other so we are prepared for “the real thing”. We are educated, we are strong and we are motivated to choose a career that others are scared of. Call us “crazy”, I guess.
Why do we do this? Because we believe that someone with a disability should have the same opportunities that everyone else has, which includes leaving their house…..even if they have an incident while they are outside of it. We understand there is a risk in what we do and we embrace the risk. That doesn’t mean that we don’t have community outbursts that are frustrating, embarrassing, painful and socially inappropriate. It means we embrace the uncomfortable….and model for others how to do the same.
At some point, “safety” is relative.
The risk of what could happen in the community is less than what will happen if they stay in an institution. The question of to do or not to do isn’t just about “Is it safe”? — The question is “Are we ok with the alternative?” Is it “ok” for someone to live in an institution where the realities and risk of abuse are astronomical? Is it “ok” to keep people removed from society where they learn counter-productive skills that will make them harder to work with down the road? Is it “ok” to say someone is “too challenging” to be re-integrated with their families, their friends, their communities? We make a choice to be on the right side and we mitigate the safety risk as it arises. It can be scary, but responding poorly to fear is what developed institutions in the first place.
The response of “Don’t Come Back” comes from a place of feeling scared and powerless and wanting to “protect our own”. I get it. I get wanting to protect your employees and your business and your reputation. Believe me, I understand. I own several public businesses where we choose to employ people with intellectual and developmental disabilities. I cringe when a customer at Crystal Joys witnesses an escalation just as I put my head in my hands when a guest at Samples World Bistro gets poor service. I sometimes have the same gut response of “can’t have that here” when I feel my businesses are being impacted. It is hard to “see it” right in front of you. The question then is “If it can’t happen here, then where can it happen?”
I choose to run a visible business that works in broad daylight. I choose to run a high-risk business with high-risk situations and people that are known to be aggressive. I choose this because I know that there have to be providers that push the envelope in an effort to make real progress towards full community integration. We can’t predict our clients just like we can’t predict the weather, but we walk the path with them and help them along their way, even if it involves a hair pull every now and then. (Don’t get me wrong, hair pulls REALLY hurt…bites are even worse). That is what makes our work “risky”… It is also important and meaningful.
When I feel the worries of “what if?” or “I can’t believe that just happened” I accept that part of living and working in an integrated world means that the terrain is a little rocky and it isn’t a perfect path. I embrace that it feels uncomfortable…..a lot of things in life are kind of uncomfortable I guess…we just choose to pretend like the alternative to not seeing the uncomfortable never existed. Exist, it did.
We as a society/community have determined that it is not an option to say “That isn’t welcome here”. We don’t live in the 50’s where institutions were simply what you defaulted to when someone looked or acted differently. We are now in the 21st century and we are governed by laws and rules and regulations that now dictate that people must be integrated into their communities — and integrate we will. Being segregated is no longer a choice and we are charged with creating a new reality with new choices for the people we serve. Those choices include going into any and all community establishments where someone without a disability would be welcome. Just as a public business can’t say “No” to someone coming in due to their wheelchair, they also can’t say “No” to someone with a traumatic brain injury that has intermittent explosive disorder. Remember that the mini “explosions” are a manifestation of their disability. Yes, it can be embarrassing and uncomfortable and scary to witness.
Remember that the person that is escalating is embarrassed and scared too…. Far more than you will ever be.
Bringing people into the community that have previously lived in institutions is like exposing raw skin to harsh conditions. Incremental exposure is the name of the game. You have to do it in baby steps and you have to do it knowing that is going to hurt a little, but that “hurt” creates an opportunity that outweighs the pain. We don’t pick them up from the institution and take them to the overstimulating zoo for the first outing. We start with walks around the block and trips to the park and then a trip to the library or to a store. The path to the zoo can be a long one — but we will get there if that is where that person wants to go. Until then, we simply practice acting in a socially acceptable way in community locations. Their trip to your store is a huge success and may have taken 6 months to get to the point where it was a possibility.
Thus, the response of “Don’t come back” is no longer acceptable. Our response will be:
“We will be back”.
Is it to provoke you? No. Is it to harm your business? No.
It is to provide meaningful community interactions to people that deserve it and are entitled to it.
I’m sorry that makes you “uncomfortable”, but let’s just get comfortable being uncomfortable. Let’s talk about HOW to partner together, HOW to plan better and HOW your team and our team can work together to promote a community where everyone is welcome and everyone is accepted.
Let’s work together to do our own part in our businesses and in our community to create the kind of society we want to be a part of.
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