Self-determination is a tricky process for people with disabilities because it operates on a continuum. Life is unpredictable, and for the most part–so is disability. But, with self-determination, the person with a disability can regain some level of control and dictate the choices and direction of her life. Self-determination is a concept where a person has the confidence and ability to decide and move forward with the best, next-steps in his own life. Not what you or I think is best, but what they want for their own lives. For many, especially those with disabilities, well-meaning loved ones have in a lifetime of protecting the person with a disability (PWD), have actually kind of sheltered or unintentionally taken control over the life of the PWD.
It’s difficult for loved ones, and I understand that better than most. I have been guilty of being a helicopter constantly propelling what I thought was best over the person I love with a disability. It’s incredibly challenging to shut that off because you love that person and want what is best for them. I know it may seem like I’m asking a lot for you to back down (or if you are a PWD, to take control)…but please, hear me out.
When I was a special educator, and then a rehabilitation counselor (CRC), I saw many students and young adults with disabilities that had their differences in ability. They had skills that needed more developing, skills they were not capable of displaying, and skills that made them unique assets in the best way. However, those unique-asset skills were often under-utilized because they had not practiced them independently on their own incentive or triggering. For example, they could do really well in an interview after having practiced and trained, but they were going on job interviews below their skill level because someone (though again, well-meaning) told them this job would be “so good for you!” Or, they were not going to job interviews at all because their loved ones were really (and understandably) nervous about them putting themselves out there and taking a massive step towards independence.
The biggest limitation in the life of any person is their own belief that they are limited. Yes, of course individuals (with disability or temporarily able-bodied) have to be realistic. I’m not saying someone who has never dribbled a basketball, or someone who has played in a community basketball league–has the skill to try out for the NBA. But I am asking for you to not make assumptions about their abilities or limitations, because when you assume their limitations, they see themselves as inherently limited. Really sit down with the person, and ask him what he would like to learn. Ask him what skills are important for adults to possess. Objectively think of the many skills he has already learned, and try to compare those to the skills he wants to learn.
I am not suggesting that anyone just shut down and remove themselves out of the PWD’s life in one clean break, no longer helping the PWD with anything. It is a process, and of course you will never just be out of their lives–you love them! Nonetheless, self-determination is learned and blossoms in an environment that encourages growth, independence, and inclusion. This is one of the reasons why so many adults with disabilities phase out of the public education system, and wind up under-employed or unemployed. Further, when students learn skills at school relating to independence, they lose those skills if they are not generalized and practiced in the home-environment. And trust me, I completely understand that as a loved one of a PWD you are busy and have many, many responsibilities for yourself and your family. That’s why I want to give you some tools and strategies for encouraging the independence of the PWD so that maybe it can at the same time lessen your work load and empower your loved one.
It is difficult for many people without disabilities to break down the appropriate steps in fostering and empowering independence in a PWD. Every person is different, but here is an example of how one could foster the self-determination process in an adult with a disability (Also: You can reach out to someone who works in this field–like me!–if you want guidance on appropriate steps for a specific person…again, progress is a continuum with steps forward and steps back, and that is okay. This does not have to happen overnight!).
Self-determination skills: Determining food choices
- Watch a cooking show on tv that discusses nutrition and healthy eating
- Practice cooking simple meals in the kitchen with the PWD, emphasizing safety and nutrition (boiling water for pasta, making pasta, cleaning up after making pasta, with canned sauce)
- The PWD cooks on his own while the loved one is not overseeing, but is in the general area in case the PWD has a question
- Show the PWD where to find coupons, and discuss how much food really costs
- Watch tv shows about the health effects of not eating nutritious (but don’t be too scary about it, especially if the PWD is someone who can get easily overwhelmed or experiences severe anxiety–in this case you can discuss food choices in terms that are not so daunting with regards to the health consequences)
- Have the PWD go to the grocery store with you and have him hold the list (if possible, have him read and check off the list as you go–if he is not able to read, that’s okay too! You can sit with him and go through grocery store inserts, pamphlets, magazines, coupon clippings, etc. Just cut those pictures out and make the list out of pictures. You can even draw the pictures!)
- After practicing #6 a few times, and if he is safely independent in public (as in, won’t go with strangers, won’t give his money to strangers, isn’t a harm to himself or others), bring him to the grocery store and have him gather the food on the list while you wait at the front of the store with a book/magazine
- After practicing #7 a few times, practice money skills. Discuss pricing of food and different ways you can make payment. Go through #7 and at the end of each time you shop, have the PWD give the money for payment to the cashier. If the PWD gets nervous, that’s normal. You can go at times when the grocery store is less busy, or teach him how to use the self-checkout line, but ultimately practice will help him feel more comfortable.
- After practicing #8, and if he is safely independent in public, bring the PWD to the grocery store and wait in the car as he shops for the food on the list, and pays on his own.
- Have the PWD make the grocery list on his own, check it over to make sure it covers essential items that are financially-responsible choices.
- If not yet learned, teach the PWD transportation options like the bus. Public transportation systems have disability-accessible bussing but the more inclusive the better (again, depending on the actual, realistic abilities of the PWD). A PWD should live and operate in the least restrictive environment as appropriate. It may take time, and it will be a little daunting for both you and the PWD, but that is a normal part of growing up and in time and with practice, he could gain much independence and allow more free time and balancing of responsibilities for you and your household.
- Have the PWD look up transportation options on his own, and then schedule it on his own, go food shopping, pay, and return home on his own.
- Combine steps 1-12.
Again, this is just a generic example. Some of these steps can be combined or adjusted if the PWD is more advanced, or they can be broken down even more. I’ve broken down the process of making a PB&J into nearly 60 steps before for a client with a disability. The most important thing is that we don’t just give up and do something for a person with a disability simply because it’s the easier and quicker thing to do. Sure, there may be days when you do not have time to pre-teach, teach, and re-teach. When you do have time though, the best way you can love a PWD is by loving their independent drive and spirit. After all, you cannot and will not always be around and in times of need the PWD should feel competent to do as much as he is capable.
This post does not come from a place of judgment. I’ve been there, personally and professionally. I know what it is like to see a loved one go through something difficult and have to maneuver life-changes after the fact. This is just guidance on a tricky part about loving a PWD, and as always I am here if you have any questions! Feel free to email me at firstname.lastname@example.org
Thank you for reading and sharing,
Ashley Jacobson, JD, MA, CRC
Disability Expert and Advocate