Going to College with a Disability

 

by Eva Sweeney, Hannah Langlie, Julie McGinnity and GimpGirl Community

Transitioning from adolescence to college (or university) life is scary at times for most students. However, being a college student with a disability definitely comes with its own unique challenges. This article explores many of the common pitfalls experienced by students, and how individuals successfully addressed these barriers.

Although high schools in some countries (such as the United States) are required to assist young adults with disabilities transitioning to a successful adulthood, many of these programs aren’t designed for a transition to college. These programs are often built around the false assumptions that disabled students are not going to attend college, or have aspirations beyond menial jobs and living at home (or in a group home). These programs are also staffed by adult, able-bodied professionals who do not have first-hand experience with living as a disabled person, and role models who have experience are rarely introduced.

As a high school student, these well-meaning programs can be a tremendously disempowering experience. Individual needs can get lost in a sea of bureaucracy and paperwork, and are often not addressed in meaningful ways. The system is not designed to give students all the tools needed to take charge of their lives and truly live independently.

Not surprisingly, in the United States only 53% of students with disabilities have completed a degree or vocational program, as opposed to 64% of their nondisabled peers (Cole, pg. 2). Students with disabilities don’t finish for many reasons, including lack of educational programs, not having access to funding, problems with coordinating support services like personal care attendants (PCAs) and medical care, unexpected medical complications, geographical access barriers like snow or long commutes, and physical access barriers like inaccessible classrooms or student housing.

We have put together a list of helpful tips for navigating the confusing landscape of college life. These tips are taken from our own experiences, as women with various disabilities, and should in no way be taken to represent all access needs. Eva attended a small, liberal arts college in Los Angeles. She uses a wheelchair to get around and speaks with a letter board since she is non-verbal. Hannah is currently a third-year college student in Seattle studying journalism. She uses a power chair most of the time and lives on campus. Julie is a master’s degree student studying music, and utilizes Braille and readers.

Balancing Academics and Practical Needs

Managing practical needs (such as personal care or navigating between classes) is critical to succeeding in college, so it is important to know what supports and accommodations are available. It is important to remember that every situation is a little different, depending on your personal needs and the college you choose. The quotes below relate each of our personal experiences.

Coordinating Disability Services

The vast majority of post-secondary schools (in the United States and other countries) have a disability services office that is suppose to coordinate all of the support services and accommodations needed by students to be successful. However, the responsiveness of the staff and quality of the services provided in each disability services office varies widely. We had very different experiences:

“My college’s disability services person was god awful. All my professors trusted me, so when I needed more time for tests, I just took the test in the cafeteria. I also couldn’t stay in the same room since my aide voiced what I’d be spelling out on my letter board and therefore, giving everyone my answers. My professors knew I wouldn’t cheat or copy the test for others. When I was done, I would just drop it off in their office. If I had used disability services, it would have been tons of unnecessary paperwork and time for each test. When I started each semester, I would email my professors and introduce myself. I would briefly explain cerebral palsy and that I would have an aide accompany me to class. I would also troubleshoot any potential issues. For example, my Human Anatomy class did a lot of work handling model bones. I can’t use my hands so instead, my professor would explain where certain bones are in my body. When I took painting, my professor was worried at first about how I would participate. But with an explanation and one or two classes, she quickly got it and I became one of her favorite students.” — Eva

“I choose to meet with each of my professors that I don’t already know before the quarter starts to go over my accommodations. Although I do use disability services, I don’t always use the accommodations for every class, I am able to customize them for what classes I need. Usually, a face-to-face meeting will help offset any anxiety that a professor might have. Because I use dictation software to write most of my papers and tests, I have a similar situation that I can’t be in the class with all of the other students, so sometimes I have to work this out, depending on what the test entails.” — Hannah

“I have always used disability services. Since I don’t have the time or energy to scan my books into accessible formats, I find them useful for this purpose. I have also worked with them to get Braille, which is very important to me. Since the college is obligated to pay for Braille, I prefer to go through them rather than trying to pay for it on my own. I try not to take tests through Disability Services though. It is much easier to arrange to take a test with a reader in a professor’s office or just take the test with the rest of the class.” — Julie

Continue Reading Going to College with a Disability

Caregivers and Relationships

This article was originally posted on Yahoo! Accessibility.

The most common question we hear from younger women with disabilities is how to manage paid caregivers (also called personal care attendants or carers) in the context of some type of relationship. Often this working relationship happens in the same home that family, housemates and romantic partners also live in. How do you maintain your close, personal relationships while managing a paid caregiver full or part time? Keep in mind the following observations are not from professionals, but collective perspective of a group of women with disabilities who have had a lot of personal experience balancing caregivers and relationships.

There have been several books written on this subject, but often the key to finding the answer is simple: You, the adult receiving caregiving services, are the boss that must manage your working relationship with your caregiver in a professional manner. We are not advocating you treat your caregiver poorly — far from it! A clear, pleasant, professional relationship will benefit you both in the long run.

However, it is important that you familiarize yourself with your rights and responsibilities both with your government and any other agencies that might be involved. Beyond rights and responsibilities, defining and enforcing the professional boundaries of your relationship with your caregiver is entirely up to you! Not your caregiver, parents (if over the local age of consent), partner, spouse, agency or housemate — you. Developing the skills to communicate with your caregiver will allow you to guide this working relationship.

The following sections build on each other. What is true for making one situation work is often still applicable for other situations. We recommend you read the entire article in order.

Friends and Housemates

Living in a home with unrelated housemates or friends is probably one of the easiest situations in which to manage the balance between managing paid caregivers and personal relationships. Generally, you and your housemate will have separate “households” (occupied space, and financial and other personal responsibilities) and shared spaces would be areas such as kitchens, laundry facilities, and bathrooms. You may also share a bedroom with separate beds, and this does add some privacy challenges (which we’ll address later on under “Spouses or Romantic Partners”).

In this situation, as long as your housemate knows that a caregiver will be present in the home, your main concern is going to be agreeing on a schedule for shared spaces that you can all stick to. This may seem too rigid for some, but tempers quickly flare when these shared resources are not available when needed. Imagine that you and your caregiver are working together to get you showered (a task that can take over an hour) and your housemate has 30 minutes to get out the door to work. You are probably going to have a pretty grumpy housemate on your hands who feels that he/she is being disrespected.

Schedules also need to be flexible at times. What if you have a hot date and need to wash your favorite outfit the day your housemate usually does her/his laundry? Just be sure to ask for a change as soon as you know one is needed. The same goes for your housemate too. Respect goes both ways!

You will both also need to agree on how shared resources are handled. Is food and laundry soap shared or separated? Whatever you agree on, be sure your caregiver is well informed and respects the boundaries you and your housemate have agreed to. If you do decide to separate resources, try labeling things to make it crystal clear what your caregiver can and can’t use. This will reduce stress on both your relationship with your housemate and your caregiver. Remember that, to your caregiver, your house is a foreign environment and no one has the ability to recall every single detail they are told. If mistakes still happen, ask your caregiver to check with you before using any product.

If any other concern comes up between your housemate and you, deal with it at the time and be sure to make the newly agreed upon boundaries clear to your caregiver as soon as possible (as well as any new caregiver you work with). Again, you will need to take control of managing your caregiver as their behavior and adherence to boundaries reflects upon you in the eyes of your housemate.

Family

What if you live with your family of origin? The following observations predominantly refer to adults receiving caregiving services as parents are still legally responsible for your care until the local age of consent (18 in the United States). Ideally, parents will encourage their children with disabilities to start taking over responsibility for managing caregivers after they reach at least age 15 so that the child is prepared for independence as an adult.

Some people with disabilities continue to live with their parents or siblings as adults, or circumstances force them to move back in to family homes some time later in life. This situation can often lead to conflicts that mainly stem from a lack of clarity about boundaries in your personal relationships with your family (on top of all the issues with housemates mentioned above).

When continuing to live with your family of origin past the age of consent, a major shift in the relationship should ideally happen when you reach the age of consent — you should start taking full responsibility for your services, finances, and life in general, and your parents should not only let you do so but encourage you to do so. In other words, you are now an adult and should both view yourself as one and others should view you as one as well.

This is a huge shift for parents who have raised you from birth and for you who has been their child for many years, and it often causes conflict that affects your ability to effectively manage your caregiver in a way that works for you. Also, you are still living in someone else’s house (unless your name is on the lease as well) and to some degree you still need to follow general rules that your family has set for their property or rented space. This does not mean that they have the right or responsibility to tell your caregiver what to do or in any way manage your caregiver for you. Like anywhere you live, you need to communicate the rules of the property to your caregiver and make sure that they are followed.

Some people rely on a parent or relative as their caregiver, full or part time (for personal reasons, such as living in a rural area, health reasons etc.). In this situation, you should still be able to own your decisions independently (such as having management over your life and finances) as an adult in order to maintain a healthy relationship with your family. Communication and mutual understanding and respect is important. You must be able to ask a family member if you would prefer them to do a task an alternative way or tell them if you are uncomfortable with something. Again, the choices must be yours.

Another concern that comes up in this situation stems from a lack of clarity about who your caregiver reports to. It needs to be made clear that your caregiver reports to you and not your family. An example: You request that your caregiver wait out in the other room while you and your partner have sex. Your caregiver is highly uncomfortable with this request for their own personal reasons, and tells your family what you are doing. This action on his/her part is both a highly unprofessional violation of your privacy as an adult and potentially illegal depending on the situation.

Spouses or Romantic Partners

Living (and sharing a bedroom) with some type of romantic or sexual partner shares a lot of functional similarities with living with a housemate, only the bedroom also becomes a shared space and the personal relationship you are balancing has added complications and privacy issues. However, you still need to discuss all of the same boundaries, house rules, responsibilities and schedule with your partner, and then communicate those to your caregiver.

Keep in mind that unless caregivers are paid privately, they are probably not allowed to do any household tasks or provide assistance for your partner, or any other member of your household.
The division of household chores and responsibilities, such as laundry, cooking, cleaning, finances, and other concerns, should be discussed in advance among household members, so that everyone knows who is responsible for a particular household task. Asking caregivers to do more than they are being paid for leads to an awkward working relationship and potentially the loss of a caregiver.

The discussion with your partner also needs to include a frank conversation about privacy concerns. Some questions to consider together: Are you going to schedule your caregiver hours so you can have regular alone time with your partner? What boundaries are you going to communicate with your caregiver if they happen to arrive while you and your partner are still in bed or undressed? If you have 24 hour caregiver services, how will you handle setting boundaries with them when you and your partner want to have sex or just talk by yourselves? If your partner is still responsible for some part of your personal care, how are you going to arrange for them to have his/her own private mental health time if it is requested?

A note: Even though there are many people who act as a caregiver for their partner with a disability, we do not recommend that you solely rely on your partner as your primary caregiver if at all possible. It not only is incredibly stressful on your partner and your relationship, but it forces you both in to a dual relationship that gets very frustrating. In a working relationship with a caregiver, you can ask for your care and household duties to be done the way you want, at the schedule that works for you because you are managing the caregiver and they are there solely to assist you. If a caregiver doesn’t work with you in a way you like, you can fairly easily find a different caregiver to work with. Treating your partner this way often leads to conflict because there is generally an expectation of equality in your relationship. Your caregiver can also deal with potentially unpleasant personal care tasks that you’d rather your partner not be responsible for. Working with a separate caregiver gives you your own mental health time and more authority over your own life. Additionally, over time this dual relationship can lead to a shift in how your partner and you view each other, your sex life, and your relationship.

Conclusion

This is nowhere near an exhaustive discussion of balancing caregivers and personal relationships, but is meant as a summary of commonly heard concerns and our collective, unprofessional opinions on these issues. Remember: Balancing your life and managing your caregiver and personal relationships is up to you, the person with the disability receiving care.

Can you think of other related issues or concerns? Have an opinion or story to share? Feel free to comment below!