Unpacking Grief and Disability

Asma Rehman, LPC
Latest posts by Asma Rehman, LPC (see all)

Did you know that July is Disability Pride Month? Let’s talk about grief and disability.

Disability Pride Month celebrates the anniversary of the Americans with Disabilities Act (ADA), signed into law on July 26th, 1990. This law was designed to add legal protections against discrimination for disabled people as well as designate requirements for reasonable accommodations and public access. It’s been less than 35 years since the ADA came into effect, and there is still not much awareness for Disability Pride Month or disability rights as a whole. Far too few places are actually accessible for everyone, and disabled people are often left out of communities because of this. Disability Pride Month is a month to learn about and fight for disabled people, and that includes learning about grief and disability.

The infrastructure in our society, both before and after the ADA was passed, often makes it difficult for disabled people to participate in everyday life. We tend to think that it’s the disabilities themselves that keep people isolated, but it’s frequently the lack of proper accommodations that lead to disabled folks being unable to access things nondisabled people take for granted.

This isolation and discrimination can lead to many emotions, including grief. The grief that goes along with disability is a topic that’s often avoided. As a culture, we tend to try to see disabled people as inspiring, which can make it even harder for disabled people to be honest about what they’re going through. Grief and disability often go hand in hand.

A Black man sitting in a chair indoors, holding a cane that blind people use. Why is Disability Pride important?

Disability is a fact of life, and it’s something that we can’t avoid forever. The World Health Organization estimates that around 1.3 billion people, or 1 in 6 people, are disabled. We will all likely become disabled at some point in our lives. More and more people are becoming disabled every day with conditions like COVID, so dealing with a disability at some point in life is more a matter of when not if.

In addition to the fact that we’ll all experience disability at some point, disabled folks deserve protection, understanding, and community just like everyone does. This month is a chance to learn more about living with a disability so you can be a better friend, and a better neighbor, and help make the world less hostile to disabled people.

Acquired disability vs congenital disabilities

So far, we’ve talked a lot about becoming disabled at some point in life, which is likely for all of us at some point. People who are born with congenital disabilities also experience ableism, isolation, and grief because of the way our society treats disabled people.

People who are living with a lifelong disability will likely have different experiences than someone who acquires a disability later in life, but there is plenty of common ground as well. There are many different types of disabilities that a person can experience – intellectual disabilities, physical disabilities, psychiatric disabilities, neurodivergence, invisible or undiagnosed disabilities, as well as sensory and perception disabilities.

Everyone’s personal experience of grief and disability will be different, even if there are commonalities. It’s important not to assume what someone is going through or how they feel based on their disability.

Being or becoming disabled can be a complicated experience emotionally. At the root of many of the emotions that go along with disability is grief. Let’s explore some common sources of grief for folks with disabilities:

The grief of “what could have been”

Disability can change the path of your life in ways that are hard to wrap your head around. You might be unable to do things you previously planned to do. Your health might prevent you from doing things that you’ve dreamed about or hoped for. We all have moments where we wonder what could have been, but it can be extra painful for disabled people because so much of what could have been was taken away against their will rather than as a result of the choices they made.

It can be distressing to feel like you’re not living the life you wanted to live because of your disability. This grief can even show up when people are content with where they are in life now. Even if things are going well, it can still be upsetting to think of what could have been if their disability prevented it.

This kind of grief can specifically come up for disabled people who are unable to marry (or who have been forced to divorce) their partners because doing so would prevent them from receiving their life-saving benefits. Joining a grief support group can be incredibly helpful for navigating these complex emotions.

Grief over progressive loss of function

Grief and change go hand in hand. One of the biggest changes that people with disabilities experience is the increasing losses, including loss of function as their disability progresses. It’s a big adjustment to be unable to do things that you used to do, and as things progress, grieving small losses can make the grief worse.

There are other progressive losses associated with disability too, not just loss of function. Disabled people feel grief over the loss of friends and loved ones; the loss of independence and autonomy, losing or being forced to change jobs, the loss of living space if they need to move to a more accessible place, the loss of the ability to go into some spaces, etc. These social impacts of disability can bring up lots of painful feelings, and the isolation that many disabled folks experience can add to that distress.

Grief over ableism and medical discrimination

As a disabled person, you’re allowed to have complicated feelings about your disability.

It’s not appropriate for people to assume there is nothing but grief in your life due to your disability – that’s just ableism. Don’t assume that everyone with a disability is always miserable or that they can’t live a happy, meaningful life.

In addition to ableism from other people, disabled people often struggle to navigate the medical system. Medical providers are not exempt from biases, and it can be exhausting to constantly have to advocate for yourself to providers who don’t believe you. Trying to coordinate appointments, rides, and finances for medical needs is a full-time job, which is made even worse by medical discrimination.

People with invisible disabilities often face questioning from able-bodied people when using accommodations like disabled parking spaces or mobility aids. This is a form of ableism, and constantly being questioned about your disability can make it exhausting or even frightening to leave the house. People with visible disabilities also face relentless questioning from strangers about the cause of their disability or offering unsolicited medical advice. Treating disabled folks like they’re not regular people is dehumanizing and tiring.

Grief of feeling limited

A big piece of disability is being limited in what you can do because our world isn’t designed to be accessible. You might be limited in what your body can do, in your sensory needs, in your dietary restrictions, in your access to the community, in how expensive it is to live as a disabled person – the list goes on.

Thinking about these limits might make you feel angry, frustrated, misunderstood, or sad. Or all of these feelings! Being limited in so many areas for something that’s out of your control can bring up waves of grief, and there is no wrong way to feel grief.

The grief of isolation and loneliness

Living in a world that’s not designed for you can be lonely. When you have accessibility needs like disabled people do, it’s a lot harder to get out of the house and maintain your social connections.

Isolation can be damaging to mental health for a lot of reasons. We are wired to live in communities, and isolation can increase stress, contribute to depression, and even increase the risk of suicide. We’re meant to share our lives with others, and the isolation that is forced on disabled people can bring immense grief.

Grief from their loved ones

Disabled people often feel the impact of the grief their disability brings out in their loved ones. Even when their friends and family are well-meaning, it’s hard to carry the weight of your grif and other people’s grief about you. It can be hard to set boundaries around this, especially if your social circle has already narrowed due to your disability.

It’s natural for the people who love you to have feelings about your disability, but it’s not necessarily always appropriate for them to share those feelings with you.

What you can do about disability-related grief

Grief is a normal part of the human experience, just like disability. If you or someone you care about is experiencing grief related to a disability, working with a therapist who specializes in grief can make a big difference. It’s also a good idea to learn what you can about different disabilities and the challenges disabled folks face and educate others to help decrease ableism and make our society more accepting of disabled folks.

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