One of our four chickens is a rescue hen named Henrietta. She lived the first year or so of her life on an egg farm. It is not uncommon for famers to clip the beaks of baby chicks so that they are not sharp and they cannot hurt each other in close quarters. Henrietta’s was not well cut, before she grew up into a hen. The top part was cut so far back that it does not regrow, while the bottom part, which was cut less, does grow. This makes it harder for Henrietta to eat and impossible for her to hold her own if another hen picks on her. When I explained this to one of my friends, who is a past client and the mother of a young man with Down syndrome, she remarked “even your pets have special needs”. But Henrietta does not really have special needs. She needs layer feed, various grains, clean water, a nice place to dirt bathe, protection from predators and bad weather, and a friend to snuggle with in the coop. And as a chicken, Henrietta is not “disabled”. She’s by far the friendliest of our little flock and has a healthy appetite, especially for worms and blueberries. When a friend, who is very experienced with raising chickens, needed a chicken for a class she was teaching, we let her borrow Henrietta. Henrietta is also a productive worker, laying eggs as tasty as any of the others. The only “special” need Henrietta has is for someone to file back occasionally her ever-growing lower beak. With the help of her personal assistants and her assistive technology (a Dremel tool), she lives a high-quality chicken life.
There has been some pushback against the term “special needs”. For example, this video https://www.youtube.com/watch?v=kNMJaXuFuWQ uses humor to make the same point as I made above. A colleague and I were talking about this, and the reality that “special needs” as the terms is used in our practices does not mean that people, who have different chromosomal, neuro-wiring, or physical attributes, need cat massages or dinosaur egg omelets. Instead, they may require supplemental supports to fulfill the housing, employment, community engagement, relationships, and personal development needs that they have along with everyone else on the planet. It is not the needs themselves that are special, but the required supports that are perhaps more accurately termed “supplemental” rather than “special”. In a similar vein, a collaborator clarified that his daughter, who happens to have Down syndrome, does not have a “dis-ability,” because the prefix “dis-” means “not” or “no”. His daughter is not lacking abilities. She definitely HAS many abilities and enjoys using and developing them. (photo courtesy of Aditya Romansa via Unsplash)
Many of my friends, who have some kind of condition that requires extra support, do not think of themselves as having “special needs” or a “disability”. When I spend time with them, I do not think that way either. But it is true that in order for us to spend time together, we have to consider certain aspects of the process more than I would with someone who does not need extra support. If they are not able to drive for whatever reason, we need to choose a place that is close to public transportation. Or I can offer to pick them up, or they can schedule a ride-share or a para-transit trip. The friend needs to set aside extra time either for making the arrangements or because, as with the paratransit (aka “dial-a-ride” or “door-to-door”) the ride is considered “on-time” if it arrives within a rather broad window. If the person uses a mobility aid, we need to make sure that the restaurant or other venue we go to is accessible. If the person requires assistance eating, I need to be comfortable providing that assistance or, we need to be comfortable with a support worker joining our get-together.
In my last blog, I explained that a large part of my job is helping clients think through all the supports that they require to enable them to fulfill their not-so-special needs that include having and managing a home, having a building a career, having and nurturing relationships (whether familial, romantic, parental, or that of friends), having a spiritual life, keeping healthy, and pursuing hobbies and interests. Typically, when a client first comes to me, her/his family are providing a lot of those supports. The person often lives “at home” with one or both parents or, occasionally a sibling, grandparent, or other relative. The family cooks and eats as a whole. Someone is always around to help with laundry, shopping, and activities of daily living. Family members help with the physical and mental dimensions of money management. IF the person is still in school, a parent or sibling might act as a reader or notetaker. If the person is job searching, a parent or sibling might assist to find, access, and complete applications and proofread cover letters and resumes. The home and the vehicle have been made accessible. Family members and sometimes even neighbors and nearby friends can almost always provide transportation if public transportation or even ride shares are not convenient.
It can take a lot of effort to fully catalogue all the support needs that people currently require and the additional ones that they will require as their life develops, particularly if we look towards a situation where each support must be located, arranged, and paid for. On top of the support system itself, we must also consider the degree to which the person with a disability can either manage or have input into the management of their own support system. We also have to understand the details of accessing potential sources of support and support funding. Do these sources have financial eligibility requirements? Diagnosis eligibility requirements? Requirements that the person be qualified for Social Security or Medicaid or both? Can you apply directly to the source, or do you need to go through a “gateway” agency? How do you document your need for services when you apply for services and to keep them on an ongoing basis? Is there more than one route for accessing the same or similar types of services and, if so, which one is the most simple and generous? Has legislation been proposed on their national, state or local levels that will improve or hinder access to these services and what do we do to advocate for or against as necessary?
I have come to the conclusion that what is most “special” in the work that clients and I do together is definitely not the aspects of life that we are planning for, nor even, so much the structures that will support that life, but rather what is special or, more accurately, “special-ized” is the knowledge that we need to have and apply creatively to make the whole plan work.