A Mélange Conversation with Rebekah Bundesen

President of the Michigan Association for Healthcare Quality

 

To young, aspiring professionals with disabilities, Rebekah says:

“NEVER devalue yourself, not even on the inside

When an employer ‘accommodates you’, this IS a legal requirement and NOT an excuse to pay you less or deny you benefits

Negotiate during the hiring process!”

MÉLANGE: How challenging is it for you as a  professional in Corporate America, being female and having a disability?

REBEKAH: It is challenging, but I find that I am a bit more resilient to barriers than some other demographics because I am a female and, I haven’t always had a good income. I’m used to doors slamming in my face.

I still have issues remembering that I am disadvantaged. Doctors have ignored my pain many times, some to the point where I would have organ damage. I learned to be extra bold when describing my pain and not taking no for an answer. Even though I am in the medical field and have a good position, I am still subject to this type of treatment.

I do also recognize I have privilege as a white woman and there are much more barriers for people of color with disabilities. I try and remember that as I advocate for myself, that it isn’t just for me, its for everyone who has a disability.

MÉLANGE:  Why do you think people with disabilities are often considered to have lives that are less then fulfilling?

REBEKAH: I definitely have seen that perception and I would argue that our less fulfilling lives are NOT because of our disabilities, rather the ableism around us!

They are not allowed to think that my life is less fulfilling if they also do not make sure I have wheelchair access in the same places they do. If you want my life to be fulfilling, why not allow me into the same restaurants you go into?

 MÉLANGE: Your guiding principles – what insights can you share specifically in relation to your career and personal life?

REBEKAH: Be nice to yourself, be your own best friend. Remember, your organization needs you just as much as you need them, so never be subservient to them, rather be their partner in achieving mutual goals. The minute they fail to meet your standards or they are not accommodating to you, time to move on!

MÉLANGE: Disability advocacy – share with us the contribution you are making in this area

REBEKAH: I work in population health and am pursuing my PhD in Epidemiology and often times I am the only person in a room who has a disability. I strive to be unapologetic about it to pave the way for others with disabilities to be in my position too.

I mentor students and am contributing research into the field. Many people in the disability community have more health disparities than able-bodied individuals, so I hope my research can highlight this and invoke change.

MÉLANGE: How accessible is your city of Waterford, Michigan?

REBEKAH: It is ok, I wish it was better. Some of the sidewalks have barriers on them and there isn’t always adequate parking. Nearby cities in some of the historic downtown spots don’t have wheelchair accessibility at all so there are some buildings and restaurants I cannot enter unless I choose to go without the wheelchair.

Things able-bodied people should not ASK or DO . . .

People will walk up to us and ask us if we can have sex. If you wouldn’t ask an able-bodied person this question, don’t ask us. Also, it is a ridiculous assumption. We can and do have sex just like anyone else.

Don’t ask us if we are really are as sick as we seem, or just faking.

If we get up out of our wheelchair, don’t assume we are not disabled. The person may be an ambulatory user.

If you see someone parking in the disabled spot and they have a placard, leave it alone. It is not up to you to decide how they use that parking accessibility. You have no idea if the person is in pain, since individuals with disabilities live with pain 24/7 and, we obviously can’t be screaming and moaning the entire time.

Do not approach. Individuals with disabilities are often fearful because they get physically attacked, stalked, and otherwise harassed by able-bodied individuals who believe themselves to be the experts of their disability. Leave it alone.

If you want to help, don’t just do it. It’s ok to ask us, but respect us if we say no thank you.

Please, stick to the rules of how you would like to be treated.

Rebekah has Ankylosing Spondylitis, a condition that causes the body to attack the spine, joints, ligaments, and organs. Eventually her spine will bend and fuse completely as well as damage my vital organs. She uses a wheelchair whenever she is out of the house because being on her feet too long triggers a pain flare. Her use of Humira suppresses her immune system and slows the disease’s progression.”