Empower Yourself: Master the Art of Independent Living

Woman in wheelchair working at computer

If you’re like many people with a disability, you may believe you’ll never be able to live independently.

It’s understandable to feel that way. But the truth is that with enough preparation and perhaps caregiver support, most people with paralysis — even quadriplegia — can live happily on their own.

I recently reported on a Spina Bifida Association webinar, presented by neuropsychologist Jennifer Turek Queally, about strategies to do just that.

Here’s more of Queally’s wisdom about ways people with spina bifida, spinal cord injuries, and other forms of paralysis can lead safe, productive, and fulfilled lives as independent adults.

Managing Medical Care

One of the most difficult parts of transitioning to adulthood with a disability is managing your own medical care.

As an adult, you’re responsible for your own medical decisions. While parents or other family members can offer support, getting the medical care you need is ultimately up to you.

This may seem intimidating, but with practice, you can do it. Here are some tips.

When visiting medical providers:

  • Think about everything you need to discuss before you get there. The visit will probably be short, so there will be no time to waste.

  • Decide if you will go on your own, or if you need someone to drive you or help remember questions to ask.

  • If you bring someone, realize that you are still responsible for making your own medical decisions. You can ask your friend or relative to leave the room if you need to discuss something private with your provider.

  • Write out your medical history before the appointment so you can easily refer to it.

  • Rehearse questions beforehand. Consider printing notes from the online portal and creating a list of questions from that.

  • After the visit, be sure you can summarize what was said and the results of any diagnostic tests.

  • Ask for clear, brief instructions for follow up, and be sure you understand what both you and your provider are expected to do.

  • Take a photo of the provider’s business card so you don’t forget their address and contact information.

Living on Your Own at Home

Living at home by yourself, even with the support of a caregiver, is undeniably challenging. There’s more to cover here than I have space for, but a few tips from the webinar will help get you started.

  • First, it’s crucial to begin learning key skills, such as planning, organization, and self care, before you move out of your parents’ home.

  • Master everyday chores like doing laundry, vacuuming, cooking, and paying bills, to the extent you can physically do them. You will need to learn and repeat specific steps for each task. Practice these before moving out, starting with a few steps and building up from there.

  • Think specifics — things like: Are there ramps and elevators to get into your new house or apartment? How will you move laundry from room to room? Are your appliances low enough to use from a wheelchair? Can you get in and out of bed by yourself?

  • If you can’t drive, locate accessible mass transit before choosing a place to live. Practice using it while you’re still living with your parents.

  • Use checklists to keep you organized while doing all of this.

After going through this process, you may come to realize that you can’t do everything alone. There’s absolutely no shame in that.

Consider a hiring part-time caregiver. They can provided needed support while still allowing you significant independence.

Entering the Workforce

Queally points out that starting a new job involves a lot of changes: managing a new environment, learning new skills, learning new routines (some of which you have to do privately), etc.

The good news is that you can get help adapting to these changes. In the U.S., the Americans With Disabilities Act continues to provide supports for people with disabilities when they reach adulthood.

For example, you may be eligible for job training through your state or local government. Your employer also has to provide reasonable accommodations for you to do your assigned work.

In terms of your day-to-day job responsibilities, think through all the required steps for each task and how you will do them.

Talk to your employer and ask for any accommodations you need, such as additional equipment, additional time for medical appointments, or the ability to work from home part time or even full time. If you’re polite and your requests are reasonable, they should be granted.

For example, I once worked in a tall building. The elevators shut off during fire drills (and actual fires), so I couldn’t use them to exit the building. I can handle stairs, but it takes me much longer than other people.

To deal with this, I asked the building manager to designate someone to walk with me down the stairs to make sure I didn’t accidently get knocked over. They were more than happy to grant my request.

Transitioning to College

Not everyone wants to or even can attend college or a vocational school. Unfortunately, this dream remains out of reach for too many people with disabilities.

But if you have enough money, determination, supportive friends and family, and accessible schools in your area, you can make the dream a reality.

Being accepted to a school is just the first step. To thrive, you need to smooth the transition, both before and after you get there.

Queally notes that, in many countries, you can receive accommodations from school staff to help you succeed. The office of disability services on most U.S. school campuses can explain the accommodations available, but to provide them to a student, they usually require a recent assessment by a qualified medical professional.

Choose a school that can provide the accommodations you need. These might include:

  • Early registration for classes

  • A different class schedule

  • Classes relocated to more accessible buildings

  • More time for taking tests and completing assignments

  • Help with mobility (clearing sidewalks of snow, etc.)

  • A central storage facility for your medical supplies

  • Support through tutoring centers, if needed

You also need to make proper arrangements for when you will be a student. For example:

  • Ensure that the school provides the medical services you need.

  • Talk to school staff about medical issues they might not think of, such as a latex allergy if you have one.

  • Determine how you will get all of your supplies to campus, for example by changing the shipping address from your parents’ home to your dorm or apartment.

  • Locate the school’s counseling center before classes begin.

The main point is to be intentional. “Think consciously about making these choices,” Queally says. “Having the ability to advocate is important, but knowing what you should advocate for is also important. College is a lot of money, so they should be able to meet you where you are as a learner to help you be successful.”

You’re Not Alone

Most young adults struggle with learning to live on their own, whether they have a disability or not. A lot of big changes are happening at once, and it can be overwhelming.

Still, people with disabilities have it much harder. There’s no point in sugar-coating that.

At the same time, I hope this and my previous blog post will provide some encouragement. If you’re an older teenager with a disability who’s thinking about what’s next, realize that with help from your family, friends, community, and school, you can have a bright future as an independent young adult. TwP

Thanks to the Spina Bifida Association for providing this excellent material. It is a fabulous organization that has greatly benefitted thousands of people with spina bifida, including myself.

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