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The ‘Me Before You’ Issue We’ve Been Afraid to Bring Up

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Like many people with disabilities, I won’t be going to see the film “Me Before You.” I heard about the premise a few months ago and was immediately repulsed. It’s yet another film where actors without disabilities pretend to be us with no understanding of the realities of our lives. Even worse, it’s another in a string of films promoting the damaging idea that it’s better to be dead than disabled. It presents suicide as an acceptable, even noble choice for people with disabilities. I can’t say enough about how harmful that idea is.

I believe the film deserves all the criticism it’s getting and more. But in our rush to condemn it, we must not dismiss the complex issues it presents. We can’t ignore the reality that many people with physical disabilities struggle with depression and suicidal thoughts. It can be difficult for the outspoken, determined disability rights community to acknowledge the ugly, painful side of disability.

We don’t want people to feel depressed about being disabled. But often, they do. And it’s time we talk about it.

When a person is born able-bodied but becomes disabled later in life, it can be a complete shock. Their world is turned upside down, and they might not be able to do some things they used to do. If they have a chronic or rare illness, they may spend a lot of time dealing with doctors and tests just to figure out what’s happening to their body. If their disability isn’t visible, they may face judgment from people who don’t believe them or minimize their symptoms. 

People who acquire disabilities are often thrown in to swim with the sharks of the health care and social welfare system for the first time. They find out those benefits they thought the government handed out like candy are actually really difficult to get. They find out their insurance doesn’t want to pay for the therapy they need or the medication that works best for their condition. They may face discrimination when applying for a job, or struggle to handle the complex maze of paperwork needed to work without losing disability benefits. They deal with issues they never thought about before, like trying to find a bathroom with a big stall or not being able to visit their favorite comedy club because there’s a step at the entrance. They find out they could buy a house for what it costs to get a wheelchair-accessible vehicle with adaptive driving equipment. 

I’ve had cerebral palsy since birth, so I am among the group of people with disabilities who grew up with our conditions. Disability has been part of our identity from the beginning. That does not make us immune from depression. Being born with a disability doesn’t automatically mean we’ve fully accepted ourselves. We have to deal with the same problems surrounding insurance and discrimination and inaccessibility, though to be fair, we’ve had more time to get used to it and develop a thick skin. But it comes at a cost. We often hurt too.

In short, becoming disabled can involve a lot of crap happening to you in a short time. Living with a disability can involve a lot of crap happening to you over a long time. It’s not something anyone would choose. It’s not wrong to feel depressed if you become disabled or have a disability. It’s “normal,” and you have the right to your feelings. But does that mean we should kill ourselves? No! It means we need and deserve support and treatment for our depression, like anyone else.

Part of learning to accept and appreciate our lives with disabilities involves changing how we look at ourselves and our situations. When we have disabilities, we may think there are certain things we can’t do. For example, an athlete who was paralyzed from the waist down in an accident may get depressed because she can’t run marathons anymore. She might not know about wheelchair racing or doubt it can be as much fun. But if she gives it a try, she might love it, or it might lead to a new interest, such as wheelchair basketball or weightlifting. Some disabilities mean we can’t participate in physically demanding activities at all. We can still find lots of things to bring us joy. We just have to be creative and open-minded.

Another common source of depression for people with disabilities, including Will in “Me Before You,” is feeling like a burden. We may need extra help, and we may feel bad about it. But that feeling comes from inside. We may see ourselves as a burden, but that doesn’t mean our loved ones do. To them the extra effort is worth it because we are valuable human beings and we deserve to be loved. 

With that said, if a person is providing constant care for someone with a disability, it can be unhealthy. Everyone needs time to themselves and a chance to pursue their own interests. I’ve often found people with disabilities and their families don’t know about options to prevent all caregiving from falling onto one or two people. Most states have Medicaid waiver programs where a person with a disability can choose their own caregivers, including family, and have those caregivers paid by the state. Waiver programs give tremendous freedom to people with disabilities and our families. I have Medicaid waiver services and am able to live in my own home and go places I need and want to go with the help of people I choose. 

Unfortunately, some states don’t have good waiver programs or have a waiting list. While I strongly advocate moving if it’s necessary to access these life-changing services, that doesn’t solve the larger problem. We need legislation like the Disability Integration Act to ensure home health care access for everyone.

And that brings me to another point. Although the medical aspects of having a disability can be exhausting and painful, many of our most depressing problems are due to prejudice and inequality. We still don’t have full acceptance and equal rights in society, and that’s frustrating. But it’s not our fault. We shouldn’t blame ourselves and turn our anger inward.

If we channel our feelings into action, we begin to realize the problem with our favorite store having a step isn’t our inability to climb that step. It’s the fact that nobody bothered to build a ramp. 

I have been extremely depressed several times in my life, and suicidal on a couple of occasions. Thankfully, I found a wonderful therapist and came out of it a stronger person. Now I live with a low level of chronic depression (plus some PTSD and anxiety), but I function well. I have a job, good friends, I travel and live a fulfilling life. I value my life as much as a person without a disability would. I know dying by suicide wouldn’t be a noble gesture, and it wouldn’t help me or anyone else. It would cause heart-wrenching pain to the people I love. But even more importantly, I wouldn’t want to do it to myself. 

Some people believe suicide should be an acceptable choice for anyone who views their situation as hopeless. Certainly, I believe we should regard people who attempt or die by suicide with compassion. But that doesn’t make it a good decision in the vast majority of circumstances, including and especially when disability is involved.

Disability does not have to be hopeless. Living well with a significant disability is possible. Millions of us do, and with our lives we defy “Me Before You” and its harmful attitudes.

If you have a disability and are struggling with suicidal thoughts, you’re not alone. Many of us have been there. Please seek counseling, and consult a doctor about whether medication might be beneficial. Your life matters. You have value. You can #LiveBoldly. 

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

Follow this journey on Free Wheelin’.

Originally published: June 12, 2016
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