We asked disabled people to share their experiences with loneliness, before and during the pandemic. Saihan and Natalie tell us what it’s like to feel isolated when you are disabled.
I once gave a speech about my experience of loneliness and growing up with Autism. My school at the time offered to publish it in their newsletter but quickly withdrew that offer. They were afraid I might get bullied or there would be some backlash. All I wanted was for my experience and voice to be heard. Ironically, my speech about loneliness was ignored.
My experience of loneliness
Long before the lockdown, I felt isolated and alone. My time was spent mainly watching TV and doing schoolwork. At school, I sat alone during break, lunchtimes and even some lessons. When there was partner work, no one wanted to work with me. When I was in primary school, I used to get bullied a lot. I got teased and made fun of which made my self-esteem very low. All of this has had a huge impact on my confidence and mental health.
Every morning, I would wake up hoping that maybe today, someone would talk to me. Sense’s Left Out Of Life campaign is so important to raise awareness of how loneliness affects people and what we can do to help make a lonely person feel better. Being lonely is not a good feeling and can be really depressing. Most people wouldn’t want to be by themselves all the time and it can cause a lot of pain and destress, especially when you are in trouble or in need of a helping hand.
Who do you turn to in this case? No one, because I have no friends.
How can you make a difference?
There is one question that bothers me every day. I look like everyone, participate in class like everyone and I breath the same air as everyone. So, why do I get treated like an alien? It is a crying shame that when I would go into class, people would move away like I was a bad smell. I am not asking for the world’s riches, sympathy or any charity, but just to be accepted for who I am. As each day goes by, loneliness wants to stay, but this can all change. How can we all as individuals make a difference? It is not that hard. All it takes is a simple ‘hello’ or ‘how was your day’ to change a person’s life.
Loneliness hasn’t stopped me from dreaming big
My mental health, autism and loneliness has not stopped me from dreaming big. Despite everything, I work hard every day of my life to achieve my goals and hope to one day, get into Oxford or Cambridge University to get a Philosophy Doctorate in Politics before moving into politics as a career. My dream is to one day, be the leader of the Labour Party and eventually Prime Minister of Great Britain in the hope that I can change how people view disabilities.
People suffering from loneliness might be lacking connections with others, and feel chained to impossibilities. What you may see as a smile could merely be the disguised weep of a wounded heart. The most important thing to remember is that it just takes one person to approach a lonely person and make them feel wanted. If you see someone feeling down, talk to them and accept them for who they are.
Being diagnosed with Usher’s syndrome in 2012 was one of the most isolating experiences of my life, especially when that diagnosis came in the form of a letter through my door. Having experienced vision and hearing loss throughout my life, the diagnosis came with a sense of relief and dread. I was happy to know that what I was experiencing had a name but, what would this mean for me moving forward?
My confidence was affected
For years, I tried to not let my condition get in my way but in 2016, I had to leave my job as my eyesight and hearing had deteriorated further. Work is so important for us as humans. It gives us purpose and control and suddenly, for me, it was gone. This affected my confidence as I was now spending more and more time at home.
There is a lack of understanding about disability
When I would go out, I had my white and red cane to show people that I was deafblind and generally, people would stay out of my way. People would soon get hostile if I did something like check my phone. There is a lack of understanding that being deafblind is a spectrum and while I don’t have complete loss of vision, I still need a cane to help me navigate. If I did something that people wouldn’t not expect a deafblind person to do, that I felt immediately shunned.
It took me a long time to build up the confidence to go out. My Sense Communicator Guide would take me out to the local community and, thankfully, I met Leanne during this time through Sense. She had also been diagnosed with Usher’s and I finally had someone to talk to who understood what I was going through. We have become the best of friends and would meet up regularly for coffee.
I find communication much harder
While the lockdown has been hard on us all, for disabled people, it has really taken its toll. Not being able to access my local community and go out as I used to has hugely impacted my confidence again and now, I feel like I am back where I started. Video and phone calls are quite inaccessible to me so I can’t keep in touch with my close friends and family. With everyone wearing masks, I find communication so much harder as I lip-read quite a bit.
I am lucky to have a husband who can help me but there are so many more people out there becoming increasing more isolated and alone. While the lockdown has been hard on us all, for disabled people, it has really taken its toll. My hope is that from this, comes a greater understanding about the difficulties disabled people face.
No-one should be left out of life, no matter how complex their communication needs. Help us combat isolation by taking our pledge to create a more inclusive society.