I’m honored to be a blogger for the Christopher & Dana Reeve Foundation. As both a wheelchair-user and psychotherapist, I enjoy discussing the intersection of disability and mental health. The spinal cord injury community is extremely important to me, and I recognize how acquiring a disability in the middle of life is both traumatic and life-altering. My story is a little different, and I’d like to share a little about my experiences with disability identity in order to explain what I have learned about disability empowerment.

I was born with Muscular Dystrophy and started using a wheelchair when I was 5 years old. Since birth, learning to adapt and navigate challenges was second nature to me. Unlike those with spinal cord injuries, I’m privileged to have never experienced a life-altering identity shift in the middle of life. Physical impairments have always been “my normal.” As early as elementary school, I remember I had to learn how to ask for help, explain my needs to other people who didn’t understand, and learn how to be a strong self-advocate to achieve my goals. But in terms of my identity growing up, I didn’t think about disability identity. I didn’t know what that was, or what it meant as a marginalized status. I didn’t think of myself as ever being different from other people, not using wheelchairs. I just thought of myself as a regular person living a regular life. I wasn’t very involved in the disability community and didn’t understand the systemic and social barriers limiting those with disabilities.

It wasn’t until college when I learned about ableism, micro-aggressions, disability shame, and the psychology of disability empowerment. I also started noticing academic and employment barriers for individuals with disabilities, inaccessibility in the community, particularly when it comes to transportation or travel. I also started noticing how people with disabilities are often denied their basic needs, especially if they rely on services like caregiving assistance. I started to become fascinated with how individuals with disabilities – and other marginalized groups – are able to cope in healthy ways in the face of oppression and inequality. Now as a psychotherapist, I work with people of all different identities and backgrounds, but in particular, I enjoy supporting people and families affected by disabilities, medical conditions, and chronic illnesses.

What I often notice in my work as a therapist is that a lot of people with disabilities have struggled with internalized ableism. Internalized ableism is when we project negative feelings onto ourselves. This happens when we start to believe how society labels disability as inferior. We start to believe the stereotypes. Internalized ableism occurs when we are so heavily influenced by the stereotypes, misconceptions, and discrimination against people with disabilities, that we start to believe that our disabilities really do make us inferior. It happens because the power of society is so overwhelming sometimes that it can diminish the way that we feel about ourselves. Internalized ableism, more simply put, is about shame.

Individuals living with paralysis may be able to relate to this concept at the onset of the injury. If you experienced a spinal cord injury and consequently acquired a sense of embarrassment, insecurity, or drop in self-esteem, you may have been internalizing the idea that disability – or needing help from others, using a wheelchair, having limitations, or any other paralysis-related nuances – is something to feel ashamed about. This is faulty thinking. The reality is that disability of any kind is not shameful, it’s not something that anybody should feel ashamed about. Nobody asked to have a disability. Nobody wanted to have a disability. If a disability is something that nobody has a choice about, why is it something we should feel ashamed about? It’s not shameful, and it’s extremely unfortunate that some non-disabled people in our society have adopted processes, approaches, or belief systems that devalue people with disabilities, whether intentionally or unintentionally.

We have to raise our awareness about disability to step back, talk about these subjects, and reflect on our beliefs and actions that may be contributing to ableism. What I want for society is for all of us to uplift the voices of people with disabilities so we can pay attention to their lived experiences, so that we can allow them to speak openly about what they feel, so they can internally accept disability as a part of their lives, and so they can feel like they are accepted by the world at large.

Specifically, for those with spinal cord injuries, it’s critical to talk about lived experiences, address mental health needs, and counter any feelings of shame. This population is perhaps most in need of understanding internalized ableism because managing feelings of shame while simultaneously coping with trauma, rediscovering purpose, reestablishing identity, and facing social and systemic barriers for the first time in life is an enormous amount of work for any human. We must acknowledge the mental health needs that a person recovering from a spinal cord injury may have. We have to be on the lookout for any feelings of shame in order to counter those feelings and promote empowerment. Loved ones, doctors, nurses, physical and occupational therapists, equipment providers, and other professionals helping in the recovery process should be mindful of language, actions, or choices that may inadvertently make an individual feel “less than.” Further, it’s paramount that we as a community create spaces where those living with paralysis can talk about their experiences without fear of judgment. This will undoubtedly lead to greater healing and ignite a path toward disability empowerment.

I’d like to share 5 healthy strategies for promoting disability empowerment:

1. Individuals should acknowledge the raw emotions associated with spinal cord injuries and locate safe spaces to talk about experiences. This is an effective strategy for both those living with paralysis and caregivers. Normalize dialogue about paralysis rather than shying away from it. Consider joining a virtual support group through the Christopher and Dana Reeve Foundation. Other strategies include exploring local disability groups in your area, building a strong support system, checking in with a mental health therapist, and honoring wherever you are in your journey.

1. Communities should have programming, webinars, support groups, online events, articles, and language across organizations that emphasize empowerment, resiliency, strength, and self-determination. Program coordinators and community leaders should publicly reject any stereotypes and ableist belief systems that diminish individuals with disabilities. If injustices do occur, they should be acknowledged, corrected, and viewed as learning moments.

1. All people should respect those with disabilities choosing to identify however they wish – whether they are more comfortable with person-first language (person with a disability) or identity-first language (disabled person). Non-disabled people should not be writing the rules on these matters. Individuals living with paralysis should be encouraged to identify with their “new normal” however they feel most authentic doing so.

1. Community leaders should uplift the voices of individuals with disabilities and create opportunities for leadership by including them in the media, hiring processes, plans for designing accessible spaces, and in projects where they can serve as leaders uniquely specialized in disability matters. Disability should never be viewed as a deficit, but rather as a strength that often brings strong skills in adaptation, problem-solving, and persistence.

1. Health professionals should acknowledge that people and families affected by spinal cord injuries may have unique mental health needs. Physical challenges can sometimes take priority and mental health can be neglected. We have to increase disability awareness throughout the health field, so professionals understand how critical it is to treat the whole person, including their mental and emotional symptoms.

If you have questions or if I can be a resource for you, please don’t hesitate to reach out. Your mental health matters.

To learn about River Oaks Psychology, visit www.riveroakspsychology.com and follow River Oaks Psychology on Facebook, Instagram, Twitter, YouTube, and LinkedIn.

Lauren Presutti, founder of River Oaks Psychology, is a psychotherapist and advocate for individuals and families affected by disabilities of all types. Born with Muscular Dystrophy and using a wheelchair throughout her life, Lauren is passionate about helping others overcome barriers and reach their fullest potential. Lauren also enjoys writing, speaking, and providing education on subjects relating to mental health and empowerment.